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Brain Injury Magee

Kentucky…

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

Categories
Brain Injury Magee

Time…

The last 24+ hours have been busy but good all around (or I am choosing to remember all of the good). Bob was upgraded to have a full diet which means he can eat in the cafeteria with me (and only me. I’m the only one who can take him – he reminds me). So after we met with tiny baby’s law guardian yesterday evening, Mikey and I high tailed it to Philly. We stopped in Deptford for McDonalds and a happy meal tiger (his new BFF) and grabbed a few things from Target for Daddy. We were surprising Daddy by being here all weekend when it wasn’t previously planned. I am also feeling guilty because I don’t think we will see him next weekend except for a quick trip up and back (if we’re lucky).

So we dropped drinks, toiletries, and clean clothes to Bob last night and checked into the hotel late. After completing our night time routine, I enjoyed a shower beer. Don’t knock it till you try it.

Mikey and I had a yummy breakfast where he terrified everyone with his tiger and then we headed to the pool.

This kid is Out. Of. Control. Thanks to his Pop Pop, he no longer has any fear of the water. Jumping in off the side. No hands and happily slipping under the chlorinated bath water. I’m terrified. He definitely needs swim lessons ASAP (in my spare time).

We made our way to Magee and took Dada outside on the 6th floor and played with our zoo train, the tiger and a fountain that Michael insisted on touching. Mikey also was trying to fix Dada’s wheelchair.

We ate lunch with Bob in the cafeteria. Our first family meal in almost 7 weeks. Insane for me to process that. And it was our typical crazy meal, so it was nice to see that nothing had changed. Michael and I headed back to the hotel to take naps and Bob had company from Aunt Sue, Uncle John, and his cousin Johnny. His cousin Kathy also came to visit and was still there when Mikey and I came back a little after 4.

We all went to the roof again to give Kathy a tour and went to dinner. Bob shared his spaghetti with Michael, who eats like he’s Cookie Monster.

This kid. You can see the pasta that I’m catching in my hand. *shudder*. We played for a bit in the family room and then headed back to the hotel.

So Mikey is asleep for the night and I am blogging, eating Cheetos, and am about to read a book that I started yesterday. Weird that I have so little time but I am choosing to read. Not watch tv. Not play a game on my phone. But read. I think I need the escape.

Michael and I almost crashed a couple of events tonight as an escape. The first was a bachelorette party as we were headed to the hospital because the group had an inflatable item and I believe their room is right down the hall from us (I’m sure we’ll know in the middle of the night). And the second was a prom. We saw all of the couples arriving as we came back from the hospital. Mikey yelled, “Anna, Elsa” as the girls walked by in their gowns. So it’s odd how life just keeps going on. I feel like one of my seventh graders who wonders how we were able to do anything when they were out for a day. Shouldn’t the classroom activities just pause? Wait for them to return? Shouldn’t everything from March 20 just stop for a little while until we are back to baseline? I say “we” because Mikey, tiny baby, and I are all on this journey (poor Brittany and Joey too). It feels so odd to know that the accident was caused by ice on the road. On March 20. And that my birthday was a “snow day” this year. And that it almost hit 90 degrees yesterday. Those temps feel like they are seasons apart (and they are) but it is really only just shy of 7 weeks since the accident.

So time is just a wild thing for me now. Moving so slowly yet quickly at the same time. Mikey is getting taller and his language is exploding. Zoom. Bob is still in the hospital and not home. Turtle crawl. The school year is almost over. Zip. Could be a year before Bob is back to where he was. Slow Baywatch run. We’ve been at Brittany and Joey’s for about 40 days. Flash. I feel like there is no end in sight to this process. Sloth.

Whether counting the seconds or wishing I could pause time, I am looking forward to spending precious moments with Mikey and Bob tomorrow. I am also hoping to take my husband down in a ferocious “to the death” Uno match. Wish me luck. I think I might need it.

Categories
Brain Injury Magee

Orange Tag = Freedom…

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.

Categories
Brain Injury Magee

Spiraling…

After the high of seeing Bob walk on Friday and celebrating Michael’s adoption anniversary, the boy and I spent Saturday and Sunday in Philly visiting with Dada. We read stories, tickled feet and bellies, and played trucks. My mom and dad were in the city overnight as well so we went swimming with Michael at the hotel pool Sunday morning. That little boy is getting more and more fearless. He was jumping in without holding hands and willingly slipping under the water.

Weekends are slow for Bob. Time drags as he has no therapy appointments. Visitors are welcomed to help distract him. Bob calls me often. Sometimes 6 times in a span of ten minutes.

Bob: Girlie. I can’t find my cell phone.

Karen: I have it.

B: ok (end call)

Two minutes later…

B: Someone stole my phone

K: nope, I have it.

B: ok.

At times the call is Bob telling me how amazing I am. And that he could never do this for me. And that I am better than him in every way (I NEED to record that one). And that he’s sorry for the burden that he is putting on me and our family. And how did you ever find these hospitals. And he’s sorry he’s failed us.

I try to spin the spiral back up out of the pit or distract him or change the subject. But sometimes I feed into it and lose it myself. Friday through Sunday were rough on us both. He often asks who is helping me and who of all these people is most helpful. And repeats these questions over and over. Think 50 First Dates.

After Michael and my parents left on Sunday, Bob and I had a date in a family room across from his room in the hospital. We watched the new Jumanji. A few hours later, we talked about the movie we watched and he thought we had seen 48 Hours.

Bob’s care conference was yesterday and there were good reports all around. Ranit thinks he might be able to walk 100% by the time of discharge but won’t change his goal officially until next week. He ate bacon yesterday so his diet has been advanced! “They just brought me a bag of bacon”. Everyone was thrilled with the progress he has made in the last week. Bob was up on the 6th floor today as part of therapy and I’m sure loved the weather. We’re hoping to upgrade to an orange or yellow tag tomorrow. This means more freedom.

I also went to a support group for traumatic brain injury tonight at Magee. Sobering to say the least. Some injuries were as fresh as three years and others more than 40. Few drive. Even fewer work. And all have similar feelings about their injury and how their brain works now. Please, please, please keep praying for complete and miraculous healing. I had to stop myself from crying a few times.

I’ll let you know how therapy goes tomorrow. I’m excited to see even more progress!

Smooching Dada after tickles.

Dada reading a book to Mikey

Magee models. And my crazy Dad.

Categories
Brain Injury Magee

Making strides…

Great day today. I love coming to Bob’s therapies. His PT, Ranit, even said today that he is more motivated when I am here. That doesn’t mean he’s a slug when I’m not, but he pushes himself even harder when his cheerleader is here. But when I told Bob I want to be here every day, he said “you can’t. We have a mortgage”. He is doing really well and making improvements physically and cognitively every day. And sometimes the brain slows down his physical improvements. So it will be a long process. Everyone here pushes him to get better. And he wants to come home so badly. He was teary last night and today because he “just wants to go home” and “just wants to run and play with Michael” and “just be a Dad”. He talks more about that than work, but often does ask me about the business and if I’m paying our bills. He seemed okay about me writing checks the old fashioned way when I told him today. Bob asked a ton today about our fertility doctor and if I had seen him lately (we ended that process over three years ago). He was almost fixated on it. I just kept redirecting him to the babies we do have. He did a great job writing in speech and answering questions and did an even better job in PT. I was going to post a picture of him standing because Brent said they had him up to three minutes at a time. I really didn’t believe him. But I figured this video is even better to share. WALKING!!! You can hear “get it big guy, get it”. That was another TBI patient encouraging him. This place is amazing. This was his second attempt at walking with assistance. The first time he was taking baby steps. The PTs and I reviewed the video and made adjustments and this was a clip of round two. I am so proud of everything he is doing. He told me today that he “hates car accidents” Don’t we all. But we love you, Bob. And thank you again to everyone who has helped our family in even the smallest way (and some big ways). We appreciate you so much and it allows me to be here to support him. Everyone who takes something tiny off my plate just continues to lighten them so I can keep them spinning. I tell Bob every day about who has stepped in to fill a need or void and he always tells me how nice you all are. And “wow”. Yep babe, just “wow”. Love to you all.