Walk Like An Egyptian

WARNING.............THIS WILL BE A LONG POSTING!

The activity level in our house these days has increased 10 fold! I have been blessed by God having so many family and friends coming by, just like it was 9 months ago. There truly has not been enough time in my day to fit everything in and I am just now finding a quiet moment to share all that has happened since I last entered a post. It is early morning and everyone has been sent off to work and school and I am enjoying the sounds of nature this morning. I have been able to gather gardenia and rose buds to fill my vases. As I was doing this, I thought about how Paul is really starting to 'bloom'! His energy level is much better, his headaches are only registering 4-5 on a scale of 1 to 10 and he seems so much more interested in the direction his life is heading. His activity level is way up also, thanks to rehab starting on Monday.

We had a wonderful weekend with Anne and Kathy Hennessy. I truly understood how Kathy felt when she left Ann here and flew back home on Sunday. As parents, we want so much for our children to grow up and be independent and happy. Saying goodbye is the toughest part. No matter how many of our children we send off, it never gets easier. Each one has their special place in our hearts. I can't tell you how happy we are to have Anne with us. We needed her fresh and happy face more than we realized. (I love passing her room each morning and knowing from the soft, sweet smell...........it is a girl's room!!!) During the weekend, Paul would go into her room and talk with her and Kathy without hesitation. After one such visit into her room, he came to me and said how nice she is and that he thinks he will get along with her a little bit easier than he did with Marie. He immediately qualified that statement with "of course, we aren't competing for Jon's attention". (Paul didn't let go of his older brother very easily and gave Marie a tough time. Michael wasn't much better at the time, much to my horror. It was also the first female other than their mother who was sharing the name Fidero! And what a wonderful blessing Marie is....there are no words I can write to express our love for her and how happy we are that Jon, using the wisdom supplied by God, chose her as his wife!) And so, another young Hennessy woman is sharing our life and we are thankful. Last night there was so much chaos in our house with family and friends visiting, I realized I had not been able to talk to Anne as she came in so late from work. I mentioned it to James after everyone had gone to bed and he said that Michael had been talking to her most of the evening. I was very happy to hear that, because it showed he must have 'lightened up'a bit after a particularly tough week. To quickly explain - we had all been very tense since Tuesday because we were waiting once again for the results of blood tests run to rule out anything really serious with Michael. In June, Michael brought to my attention the fact that he had enlarged lymph nodes on his neck. He must have done some research because he thought he might have lymphoma and so he talked to us about it. He has lost over 40 pounds since last Fall and has been tired more than usual. Put together, it caused us great concern. We had blood work done in June and then again Tuesday because added to the list was pain in his chest, but no associated coughing. The results are showing normal and the same as his first set of tests. The weight loss can be explained away by the trauma of Paul's accident, and then this summer, Mike has worked 10-12 hour days in the intense heat we have experienced in Atlanta. But the rest of his symptoms are still unexplained. We will continue to monitor his health very closely. He also was worried he would not get a parking space at school, but since he was a senior, he got priority over Juniors in a lottery and is basically a happy camper now that his test results are showing normal and he has a place to park his truck. And if Michael is happy...........we all benefit!

Like I mentioned, Paul started rehab on Monday and I went with him as they wanted his primary caregiver to be present on his first day. We started out with Physical Therapy (PT) and we had a woman who was filling in for the regular person. She asked Paul right away if he really loved his mom or did he need to have his hand on my shoulder to help him walk. He seemed to take offense at this approach and I could tell by his tone of voice. He said matter of factly, "Both." She said they would try a few things to see how bad his balance was. After he walked alone and did some stair climbing and then walked up and down a long incline, she said she noticed he wasn't moving his arms much or his head when he walked. She said that he seemed rather stiff and that possibly if he loosened up his arms and moved them as he walked, it would help him feel more confident. He had good balance and it was more out of habit than need, that he was using us for balance. She had demonstrated how our arms usually move back and forth and our heads turn and look at things as we walk. For whatever reason Paul had not 'connected' with this woman, he demonstrated his feelings by exaggerating these suggested movements when she asked him to walk again. He looked like a wind-up toy Egyptian. I could not contain my laugh, as I knew he was showing his feelings about all this. The therapist recognized 'attitude' also and laughed really hard. She had to go get something and after she walked away, Paul leaned over to me and said, "I don't like her very much." I asked why and he said something about her not being all that nice. I told him she was just a very direct person and that she is serious about getting the job done. She wants to see Paul walking independently, just as we do. He said he understood all that, but he just didn't think she was someone he wanted to work with. I reassured him she was only filling in for the day. Throughout the day, Paul would go into his 'Egyptian' walk when someone asked him how his PT went and what did he learn. We ate dinner at my sister's house on Monday night because my other sister Mary Beth is in town this week with her son James. Also, Bev's daughter Anna was in town from Colorado in the hopes of seeing her brother Joseph, who was supposed to be on leave from Iraq. He has been delayed for a week, so Anna missed seeing him, which was obviously a huge disappointment. Even Mary Beth will miss his visit home. Anyway, Paul put on a very funny display of his new 'method of staying balanced' and had us all laughing so hard. He was our entertainment that night.

Tuesday we went to Savannah for the follow up appointment with the neurosurgeon. The morning sky was amazing again........lots of rays of sun filtering through the clouds and there had to be at least 15 rays coming down across the sky. As we were driving I could not help but keep looking at this expanse of beauty before us. The rays seemed far ahead of us and we were in the shadow of clouds. I started to pray quietly to myself and I had no sooner finished my prayer for a miraculous recovery of the paralysis of Paul's face when I was bathed in the light of the sun. It actually startled me and I realized we were in one of those rays of light. The timing of this made me start to cry. After all this time I know prayers are answered according to God's will. To have this little bit of 'confirmation' was awesome indeed. It wasn't until later that that moment would be of great help to me. Our appointment was a huge and I mean huge disappointment to me. The doctor said that there is nothing more he can do. He was not going to adjust the shunt anymore and with Paul's headaches easing down to 4-5 levels of pain, he feels that that is as good as it is going to get. I was stunned. I asked him if this was it for Paul - what we have is all the relief he will get? The doctor said that maybe a neurologist can find the right mix of medicines to take the headache away. Paul may possibly be getting headaches from the shunt, but it would be very risky to take it out and he would have to be in the hospital for 3-5 days with a drain in his head as a way of monitoring whether he needs the shunt or not and that insurance would probably not pay for that. He feels that we should leave the shunt in and just find the medicines that will relieve Paul's headaches. He did not want to adjust the shunt either. Jon and I asked more questions so that we could try to understand why this doctor was telling us he can't do anything else. He said for our peace of mind he could see Paul in a few months just to check up on him. He would refer us to a neurologist though. I asked if another type shunt would not work better and he said he didn't think so. I had been told by the hydrocephalus association that there is a shunt that has worked better on a number of patients and this doctor said that maybe it was more of a psychological vs actual kind of relief for them. The doctor left the office and Jon and I looked at each other in disbelief. Tears filled my eyes and I said I could not believe this was as good as it was going to get. Jon said that he was not going to look at it that way. He said we set out to find an answer and God has let us know to just 'move on' and get other things fixed. We had prayed for an answer and this seemed like a definitive response that we needed to go forward with getting Paul's eye and ear fixed and God would handle the rest. We had seen 3 doctors, nothing else was going to be done and that was the answer for right now. Jon's words brought me comfort and reassurance and then I remembered very quickly the ray of light shining on us that morning. I chuckled to myself and told God I was so thankful He had given me that visible and definitive sign that He was traveling with us. He will get Paul to the recovery He has in mind. Paul was supposed to have the memory problems, but it appears I am the only one who is struggling with that!!! GOD IS WITH US. ALWAYS.

After the appointment we got in the car and Paul went to the very back seat in the van and laid down. I asked Jon if he wanted to maybe drive downtown to see Savannah, since it appeared we would not be back too soon. We were discussing what we might want to do, then both our phones rang. Paul had sent us a text message that he would really like to go home. It made us laugh and we looked back at Paul and he had his hat over his face. He really wasn't up for any sight seeing adventure! I didn't mind, since my sister was visiting and we would get back in time to visit with her for awhile that evening. Paul did not talk the whole way home, except when we stopped to eat. We came back to a really bad thunderstorm and he was still in the back. I thought he was sleeping but then my phone rang. He wanted to know if we were almost home. We were about 3 miles from the house. He got up and from that point on was very wide awake until we called it a night around 10 P.M. He was glad to be home!

On Wednesday, my sister Mary Beth took Paul to his rehab so I could get back to work. She has had a lot of experience with therapies, as her son James has needed them to overcome his inner ear problems and subsequent learning issues. He has progressed wonderfully over these past years. I was so glad she could go with Paul, as it would be a fresh set of eyes watching Paul. It turned out to be a real blessing. Paul did very well with his therapies, and had the new physical therapist laughing when he demonstrated his Egyptian walk. He articulated very well why he does not like to listen to music. He told the recreational therapist that when he listens to music, 'good music', he can't help but 'pick apart' (hear) all the different instruments and listen to them. He doesn't hear it as a whole. He can't help it, that is how his brain works when he listens to music. Because of this, he gets a headache more quickly. Another thing I asked Mary Beth to check on was if they could help Paul get back the volume in his voice. He talks rather quietly. When asked about it, Paul told the therapist to put one finger in her left ear. He told her to talk. He said that is how it sounds to him and that it hurts if he talks louder. I tried it and sure enough, it would make me want to talk softer than my regular tone. Mary Beth said that Paul did a lot of talking with his therapists and his conversations were appropriate and more mature than when he is at home. He still joked around like he does at home, but he answered questions with a serious manner and succinctly. She said it was great getting to watch him interact. He has exercises to do 2 times a day everyday. The long term goal they hope to reach in the next 4 weeks is to help Paul attain full independence. He should be able to be on his own, with someone checking on him only every once in awhile. He will work on doing things in the kitchen (they have a mock apartment set up), from doing dishes to preparing food. We are encouraged to have him do all this at home also. He has visible weakness in his left side, which they will concentrate on. They also determined that his balance issues are due to the inner ear and they will work on strengthening the vestibular ( I think that is the correct body part!) They said we definitely need to move forward with getting anything that can be repaired in his ear completed. It will go a long way in helping him have a better sense of balance, along with allowing him to be independent of holding on to our shoulders. They also recommended we get the eye fixed soon as those muscles need to be strengthened as well. This confirmed what Jon said in the doctor office on Tuesday. He took it as a sign that we needed to forget about the shunt for awhile and move on. We intend to.

Back in January,while Paul was still at Shepherd Center, we met a family whose daughter was there. Her name is Shea Hickok and she has a blogspot also. I had read that a month ago they had used a plastic surgeon for the rebuilding of the orbital and that the surgery had gone well. I had called her parents a week or so ago and left a voice message asking them to call us so we could ask them what they thought of this surgeon. I got the call yesterday and Mrs. Hickok said that they had found a surgeon who was terrific. We now have a place to start and I will be working to get an appointment with him. He is board certified in 3 areas, one also being the ear, nose and throat. Our hope is that he can fix Paul's orbital so that his eye will be able to rest correctly in the socket and also repair what can be repaired in his ear. Keep us in your prayers that we are led to the doctor who can help us.

Paul has progressed this week to taking a shower by himself, without the little chair he sat on. He is clearing the table after each meal, and he unloads the silverware. I think that he will keep progressing quickly and one major mental improvement that I noticed was when we had the feeding tube removed. He seems to act less like an invalid than before. I think that tube was a constant reminder that he had suffered a serious injury and he was stuck with 'playing the part'. It was a very freeing thing for all of us!

I will let you all get back to work or leisure at this time. Things are settling down around here, except for getting James ready to leave for Austria next Wednesday. That is our next 'scheduled' big event!

May God's light shine on you today, and help you walk forward confident in His love for you. Walk like an Egyptian!

Peace in Christ,
Jon and Rebecca