Unrestrained NJ

The report from the urinalysis is that Bob does in fact have another urinary tract infection. So back on the meds he goes. He sounded absolutely terrible to me on the phone today and I was tempted more than a few times to head to PA early to make sure he was ok. His nurses, Melissa and Tedra, do a great job keeping me informed (and leaving me alone when there is nothing to report). I appreciate both ends of that. I have plenty of other things to tackle on a daily basis.

Bob also made it through all three of his therapies today even with being uncomfortable. I honestly thought he would have just wanted to lay in bed and rest. But he’s a fighter. (I would have opted for rest)

I was very excited to get out there today and visit with him and even more happy that it was Tuesday, which is open greenhouse night with Jeanette. She offered us a few projects to choose from. We worked on a temporary one as well as a more permanent creation.

Quite a juxtaposition when thinking about it and looking at the art we made in the greenhouse side by side. Bob decided to create for me a vase of fresh cut flowers and arrange them himself. It means more to me than any flowers he has ever had sent to me. Though I was terrified that he was going to snip the meaty part of his palm when he wielded the snippers to trim the stems.

He told me that he picked the purple “Mother’s Day” tag because it is my favorite color. But cut flowers, while lovely, are temporary.

We then worked on a stepping stone to put in our yard at home. Bob had to add the concrete to the mold and we worked together the fill it with colorful stones and shards of glass. Bob decided that he wanted them all to be blue. And it looks beautiful.

I’ll be able to take it home with me in a few days. Hopefully this will be a more permanent reminder of this season of our lives.

It’s been seven weeks today since the accident. Seven weeks ago I was asked to sign for my husband’s personal effects by a hospital staff member. 49 days ago I was handed his watch, phone/wallet, and wedding band. I sat by his bedside at this time almost two months ago in shock and disbelief. These feelings of fear, imbalance, and exhaustion in our lives will be temporary. But the changes in our outlooks are permanent.

Permanent are the people who have been by our sides helping meet our needs where we are. I continue to be amazed at how people react to us and our temporary situation. The texts started pouring in this morning about how to help my elbow heal. And then one of my students brought in an elbow brace from him mom who read the blog and ran out to CVS just for me this morning (it has felt better with the brace on all day~Trish, you are fantastic).

Permanent is the sound of Holly’s voice on the video of when Bob first woke up from his temporary unconscious state to have a conversation with us. I called Holly tonight to thank her for temporarily caring for Bob because she has made a permanent impact on our lives. Bob often tells me that he reads the note she left for him in the visitor book we have taken with us to all of the hospitals.

I am still so grateful for all of you and the power of your prayers. Over dinner tonight with my dear friend, Suzanne, she shared how she asked a group at church to pray for my husband. No names were used and afterward, a friend of hers approached her and said that the situation sounds very familiar to one in which her accountant asked her to pray. Again, with no names. They both pieced together that the prayer requests were one and the same. Suzanne’s friend, Bob, and I have all met before and we use the same accountant. It is a small world.

Please keep your prayers coming. While it might be temporary for you to beseech God to help Bob, the effects of your prayers are having a permanent impact on our lives.

Much love to you all…Karen

Bob had a strong start to therapy on Monday. His speech therapists, Ashley and Alyssa, arranged for the therapy dog, Kentucky, to have a session with him.

Bob had to focus on remembering multiple commands to give Kentucky as well as facts about the adorable canine. Bob later told me that Kentucky knows over 100 commands.

Nope. No way. Not getting a dog anytime soon. I sent Ashley an email asking her to let Bob know that. She said that Bob had already talked about how he was going to convince me to get a dog. Ashley very kindly redirected him and they had a conversation about how now would not be the best time to add a four legged friend to our household. I did say, however, that I would allow him to bring Kentucky home with him.

Bob wasn’t really himself for the second part of our visit on Sunday or on the phone Monday. My mom and dad met me in Deptford so that they could take Mikey for the rest of the day and I could spend time with Bob. We played SkipBo and had cheesesteaks for dinner with his friend, Sam. He had a very low grade temp (99.2) in the late afternoon and his left arm and hand were shaking during dinner. He was complaining of being cold. I was worried. I checked in on him a few times Monday over the phone and he just didn’t sound right to me. He was mixing up days that people had visited or thought that people who live multiple states away had been by. I haven’t heard talk like that in a few days. I learned that he didn’t sleep well from Sunday to Monday and that they were adding a new med to help with the bladder issues. He also had a chest X-ray and additional urinalysis this afternoon after he was too wiped out to finish his OT with Brian. Those results come back Tuesday. He also has another conference on his progress today.

On another note, I’ve been having pain in my right elbow for weeks now. Brittany has a similar pain in her shoulder which has been described to her as “single mother chicken nugget shoulder”. You’re the only one in the car handing things to the kids in the back. I must have “single mother choo choo, tiger, binky, tissue, apple juice elbow”. After speaking with the resident MD (Joey) and checking google, it’s probably tendonitis, aka tennis elbow from overuse and repeated strain. I’m sure picking up a car seat, Michael, or dragging luggage back and forth across a distance at least twice a week isn’t helping. And the protocol is rest and ice. So this was my text exchange with Joey after I was *supposed* to go to bed at 9:30 since my tiny baby friend likes to party in the middle of the night. Yes, it is 3:30 am. (We just wrapped up the rave.) I had also been up waiting for a call from Bob’s nurse because I was concerned about him and wondered if I needed to rush out to Philly to check on/advocate for him.

So that Joe Joe got me a little teary. Bob talked to Joey on the phone tonight and thanked him for taking all of us in. Joey said that they love the kids like their own. (I’m just part of the package). We are beyond blessed to be surrounded by amazing friends who have become family and now our landlords. We often discuss which one of the three of us would be evicted first. The consensus is usually Michael. He can be a stinker. C’mon, he’s cute and sweet, but he’s TWO.

Please pray for healing of Bob’s brain as well as his bladder issues. I KNOW your prayers are working to heal him and make him whole. He will see a urologist in the next couple of weeks. Pray for my elbow too if you can sneak that one in there. Thank you all!

Love, Karen and Bob xo

I spent the day with Bob at his therapies. It is always incredible to see how far he has progressed in a short time as well as sobering to see just how much further he needs to go to reach baseline.

We started the day with speech therapy and Ashley and Alyssa. Bob worked on word association where he was given three words and asked to recall one word that associates all three. For example: branch, leaves, roots. That one is tree. Easy, right? Nope.

“tall, city, building”. I cried foul. We have no frame of reference as we are country mice. It took ME a minute to come up with skyscraper.

“white, mouth, chew”. Bob said horseradish. I say he gets credit. It’s white. And you chew it in your mouth. His caseworker, Trisha, later on in the day said “gum”. The “correct” answer was teeth. Don’t let me lead you astray. He did an amazing job with all of the other ones he was given. So well that we moved on to another game.

The next one was called “Rhyme Out”. You were given three clues and asked to produce three rhyming words that matched the clues. Example: A home. A rodent. A girl’s dressy shirt. (house, mouse, blouse). This task was pretty tricky, but we were able to do it with a little help. By we, I mean me too. I had to stifle my highly competitive side because I REALLY wanted to blurt out answers.

The best part of my day was next. ORANGE. TAG. Bob is no longer a member of the red tag club. WE CAN LEAVE THE FLOOR! This means cafeteria for music. This means 6th floor for outdoors and movie nights. This is a step towards independence. I was trained and my name is on the board to be able to wander around the building with Bob. So. Exciting.

So as soon as that tag was secured, we high tailed it to the elevator. We wandered the 6th floor gardens and therapy rooms. He remembered that he had visited the roof yesterday and had counted the American flags on the tops of the buildings. I had never noticed them before. And I was super thrilled that he remembered something new for 24 hours!

Bob was very impressed with the decision Suzie and I made to send him to Magee. He said he wouldn’t know where to send me if the roles were reversed. I said, “Simple. Decision has already been made. Send me to Magee”.

During PT with Brent and Ranit, Bob worked on shifting his weight from side to side to tap his foot out in front of himself on a blue circle and then a low stool. Both the hubs and I commented on how amazing the mechanics are of walking. We all take it for granted because we just “do it”. But you have to shift your weight to one leg to be able to lift the other and place it in the direction you want to go. And back and forth. Incredible. And then Bob walked around the gym. Literally. The ENTIRE gym. Just holding hands with Brent and Ranit. He is improving physically at an amazing rate.

First walk of the day. I had to jump out of the way and he kept going.

At the end of this next video you hear me say “there’s not much further to go” but he did. In a huge circle all around the gym.

We parted ways for lunch and I listened to a musical performance while I ate and chatted with my stalker friend, Keith. He just wanted to check on me and is going to come and see Bob and I the next time I am there for a day.

The next hour or so was pretty fun. I gave Bob a haircut with the trimmer I bought him a few weeks ago. Just a buzz and I shaped up his neck. His head injury must be pretty bad because he said I could cut his hair all the time now.

Then we wandered over to the day room to play a few hands of Uno. It felt great to sit with him and do something that we normally like to do. Bob said “I just miss being with you all the time. You’re my best friend and I just miss you”. He also continues to tell me how much better than him I am. And how proud he is of me. And that he made a good choice when he decided to marry me. I really need to start recording these conversations.

Back to Uno…first game, he beat me. Not as in “I let him win because he has TBI”. Nope. Legitimately. HE BEAT ME. Kinda crushed my spirit a little. So the next game I hit him with a double “draw 2” combo followed by a “draw 4 wild”. I won that hand and he described my playing style as “ruthless”. Yep. I am.

Crushing me with his final discard.

OT with Brian was good. Bob worked on standing up, sitting down, scooting, and had the second part of his vision test. He is doing well in OT and may soon progress to a different type of wheelchair so that he can propel himself. I started to doze off again, but I didn’t get caught this time.

Bob called me a half dozen times tonight and I almost lost it one of the times. I was taking both boys to Target to buy Bob some more gym type shorts as well as a few toiletries. God bless Brittany for meeting me there. But as Bob and I talked on the way home, the baby was crying and Michael had a fire truck that is so loud I always think I’m about to be pulled over. And it was just too much. And I’m tired. I’m always tired. Because even when I “take some time for me” there are things to do. A Progressive phone call to discuss his benefits with the insurance claim. That are only coming after 6 hours of leg work on my part. A phone call from the baby’s law guardian because court is Monday and maybe she should come and see him tomorrow for a report. (old Karen would have been blowing her phone up and demanding a visit for the last month). Nothing like the last minute. “Nah, we don’t have plans. Come when it’s convenient for you.” While I’m trying to book the hotel for the weekend to take Mikey up to see Bob and surprise him with longer visits than normal. And I have to go to the pediatrician to pick up paperwork for a meeting on Monday afternoon for tiny baby. And pack. And wash Bob’s clothes. And I have the beginning of a stye. So Bob’s phone calls to sing my praises in the middle of a baby meltdown we’re not received well.

But what broke my heart tonight was Michael really breaking down and crying for his Dada. Real tears. Nearly inconsolable. Until Joey gave him a tiny rock em sock em robot. It was the saddest I’ve seen Mikey in a long time. We’ll see dada this weekend and be able to play with him upstairs and outside.

I also want to thank Alyssa and Brent. Today was my last time seeing them because they are both graduating over the next week. You are both already amazing therapists and will excel wherever you are employed. You will both continue to make a difference in people’s lives as you have made a difference in my family. Bob always says incredible things about you both and tells me how you are willing to try anything he asks. We will both miss you.

Please keep praying for a miracle. We need it. Bob needs it. If you ever want to call and talk to him, send me a message or email and I will give you his number. Thank you all for your love and support.