Wilmer

It is 2:30 am, and instead of pumping, I am nursing the baby again. She so rarely wakes up in the middle of the night like this! Hopefully, she'll fall back to sleep shortly and sleep through the rest of the night.

As expected, today was an extremely long day for my mother, and exceptionally exhausting. She was a trooper, and truly hung in there. In fact, she did much better than we had anticipated!

The kids slept in for me this morning - Maya woke up around 8:30, and Micah slept until 8:45. We brought them both into bed for a little while, but we went downstairs before 9:00 am. My father and I spoke a few times this morning...I checked in with him to remind him about getting my mother's medications for the day and a list of other supplies we might need, and he also called to tell me that the wheelchair transport was running about 30 minutes late.

Megan arrived a little after 9, and I took some time to shower and get dressed. While I was getting ready, I noticed a huge leak in our bathroom from all of the rain...part of the ceiling and the wall were falling down. Not really a surprise...we've had roof issues for a long time that were supposed to be corrected in our last renovation. Unfortunately, our contractors did a terrible job, and created some new problems and failed to fix some of the items. Luckily, this addition we are starting should address the problems. In the meantime, Elliot found the source of the leak, and managed to put a temporary fix on the problem.

Megan arrived at 9:00, and I managed to get out the door with Maya at 9:30. While in the car, I spoke to my father again, and I learned that he had not gotten all of her medications for the day. He did get a few of the critical medications (like the chemotherapy drugs), but he did not get her insulin, her Tylenol, or her medications for her intestinal issues. I was worried about getting through the day without all of her medications.

Despite the heavy rain and poor visibility, I made great time getting to Hopkins, and arrived there around 10:30. I called my parents and found them over at the Wilmer Eye Institute just as the appointment was beginning. We started out our appointment with a young doctor who asked a lot of background questions and did some initial screening. She decided to send Mom downstairs to have a field of vision screening test.

Initially, the doctor wanted Mom to transfer into a chair, but when I realized that it had limited support, I knew Mom would not be able to stay in the chair and hold herself upright. We used a bit of creativity, and managed to bring Mom's wheelchair into the room. She needed a little help lining up with the machine (she had to lean forward and place her chin on a rest and stair at a dot in the center of the machine), but we got it working!

I helped support Mom's back during the test while my father sat with Maya outside the room. The test was quite fascinating - my mother leaned into a half sphere, and with one eye covered at a time, she was asked to stare straight ahead at a center point and press a buzzer when she could see a light enter her field of vision. As mom leaned forward, this device that looked like a flashlight on a manual arm bobbed and weaved behind her. It was obvious to me that my mother could see nothing on the left half of the sphere - there was a clear center line, and for each eye, she missed the light any time it was on the left side of that center line.

After the field of vision test, we tried transferring my mother into the examination chair so that they could do another test. Unfortunately, she was not able to line herself up appropriately or see what she needed to see, so they were unable to conduct the test. We transferred Mom back into her wheelchair and returned upstairs.

At that point, she started to complain about being tired. We reclined her in the chair and gave her some water. We waited for another 15 minutes, and then went into another room with the primary doctor - Dr. Goldstein. She was wonderful. They were able to keep Mom in her wheelchair and do a standard vision test. What we learned is that with her glasses on, my mother's vision is excellent - when she can find the letters, she can read them perfectly. The biggest challenge for my mother is putting things within her field of vision, and remembering to scan to the left to find things outside her field of vision. This problem is called neglect.

After the vision test, we were taken to meet with the low vision occupational therapist, Cat. While there, my father ran out to get us all some lunch, and we ate while we met with Cat. She was a huge help - she ran a number of tests, did a cognitive function test, and started to teach my mother a few techniques for scanning. She gave us a list of suggestions for helping my mother as well. For now, Cat does not think insurance will allow us to do therapy on an outpatient basis until my mother leaves the inpatient rehab at Levindale. She gave us a few devices to buy for mom in the meantime, including a talking watch and a light. Cat will talk to the occupational therapist at Levindale and give her some suggestions for the therapy, and we will start working with Cat upon my mother's release.

After we met with Cat, we went down to radiation - we did not get there until 2:15 or so. Radiation was running very late, and it was nearly 3:00 before they took my mother back. We met with the nurse to discuss the fact that my mother has been getting headaches recently. We need to watch this carefully, because it could be a sign of brain swelling, and her steroid may need to be adjusted.

After radiation, we waited for the transport to head back to Levindale. It was nearly 4:00 before we returned. We learned that Mom's roommate had checked out, and we were able to move Mom to the front bed in the room - good for her vision. Mom was extremely impatient while we waited for the room changeover, but we finally got her back in bed around 4:30. Jeremy had joined us and helped us keep Mom company while we waited. After the changeover, Dad left, and Jeremy and I stayed behind to help Mom with her dinner (she ate the chicken salad from Panera tonight). Jeremy did most of the helping - I sat and nursed Maya for the trip home.

Jeremy and I both left about 6:00 pm. On my way out, my mother called - she was just practicing with her phone! Cat had told me that I had picked a good phone, and we just needed to work with Mom on training and use of it. I made good time getting home, and spent the evening with the children. Micah went to bed early, and Maya initially fell asleep at 8:40. My mother called again to tell me she had been up and watching NCIS (Jeremy had turned on the tv for her) and she was going to try and sleep. I ordered a talking watch for my Mom and I found a few of the other devices Cat recommended today. We are going to try and start working on a crochet project, but I think I need to order one more device for my mom this week to make that possible.

Unfortunately, Maya woke up again at 9:15 and then again at 2:30. It is 4:00 am, and she is fussing again, so I'm going to go upstairs and try to nurse her to sleep. Mom sounded great, and did really well today. My Dad called this evening, and the nurses said she was having a good night. Hopefully, she'll still be in good spirits in the morning!

On My Own

Despite all of my concerns, today went surprisingly well! Both children slept through the night, and Elliot managed to leave the house this morning without waking the children. Maya woke up first, I think around 7:30, and I brought her into bed to nurse and sleep. Micah woke up around 8:15, with a very insistent "MOMMY, MOMMY, MOMMY, MOMMY" shout that would not abate. I tried leaving Maya to sleep in bed and take care of Micah, but the minute I got him downstairs, Maya started crying. I ran back upstairs to get Maya...and Micah screamed at the bottom of the stairs until I returned. For a few moments, I had a bit of a panic...how could I possibly handle an entire day like this?

I put Maya down on the play mat for a few minutes, and Micah joined me in the kitchen. I poured him a sippy cup of milk, strapped him into his high chair, and gave him cereal and a banana for breakfast. While Micah ate, I quickly ran downstairs to the laundry room and grabbed a clean outfit for him, and another one for Maya. I came back upstairs to find Maya crying, so I transferred her to the swing.

I spent the next hour trying to keep both children calm and occupied, and much to my amazement, it worked! Maya fell asleep in the swing, and Micah ate his breakfast, let me dress him, and was busily playing with his toys. I was on the phone with my friend, Heather, around 9:30, trying to figure out how to get upstairs to get showered and dressed when there was a knock on the door...it was our babysitter, Christin! Apparently, Elliot had mentioned to her that I might need help today, and although we never called her to make arrangements, she decided to come over. I was relieved to see her.

Just as I thought I had things covered, it dawned on me that Micah had swim class at 11 - I had completely forgotten! I ran around gathering our stuff...I put myself in a swim outfit and packed a change of clothes and some showering supplies. I asked Christin to change Micah into his swim suit and to pack up the clothes he was wearing and put his diaper in the swim bag. After I sat and debated the best plan of action for a few minutes, I decided that Micah and I would go to swim class, and Christin would stay behind with Maya. I asked Christin to pack up a sandwich, some cheese, fruit, and some cereal for Micah while we were out so we could easily give Micah lunch and leave right when we came home.

On the way to class, I spoke to my father - he said he would be leaving shortly to go see Mom. Neither one of us had received any phone calls, and my father had checked in with the nurses to make sure she was doing well.

Swim class was fun - we worked on floating, blowing bubbles, using our arms, climbing out of the pool and kicking. Micah had fun and was participating the entire class! He gets a bit scared when he floats, but he seems to calm down quickly if I sing to him. He is never afraid to put his face in the water or put his head under, and he really seems to love swimming.

After class, we gathered our things and went to shower. I quickly rinsed myself off and focused on cleaning Micah. He is not thrilled with the idea of a shower, so keeping him under the water is challenging. He did a good job, and put up very little fuss. I managed to get his hair washed, his body cleaned, and I threw out his swim diaper. I wrapped us both up in towels, and moved over to the dressing room area. As I was getting Micah dressed...I realized that Christin had forgotten to put a diaper in the bag, and I had forgotten to double check before we left! As I sat there trying to figure out a plan, I realized I had only one option - put Micah's pants on, sans diaper, and hope he didn't pee in his pants before I got him diapered. Once we were both dressed, I ran out to the car thinking "please don't pee, please don't pee." I checked in the car, hoping to find an extra diaper, and much to my amazement, we had one! I managed to get the diaper on Micah while he was standing in the parking lot, strapped him into the car seat, and we went home. We took a quick pit stop at home so Micah could eat some of his lunch and I could nurse the baby, but we were back on the road by 12:30. I was lucky that Christin showed up today - there is no way I could have managed getting Micah to swim class without a little help.

The car ride was uneventful...Maya screamed, but fell asleep for a while, and Micah got bored about 30 minutes in and started sticking his fingers down his throat to choke himself. I hate when he does that! Instead of yelling at him (which NEVER works), I tried singing songs with hand motions. Micah started doing the hand motions and singing with me! We sang Twinkle, Twinkle, Little Star, then we sang If You're Happy and You Know It, Clap Your Hands, and then we finished our trip with The Wheels on The Bus. Micah was actually doing all the motions, and he was prompting me with which sounds/motions he wanted to do next. It was so cute...I knew he could do the motions, but I always thought he copied me - I had no idea he knew the words and could do the motions and sounds without following someone.

We arrived at Levindale around 1:30...just as Arleen and Lorin got there. They helped me load the children into the double stroller and walk them inside. Lorin wanted to do much of the entertaining himself...you see, he is a G.I.T...Grandpa in Training! He kept telling me how he needed practice for his soon-to-be grandson. We got upstairs to find a small crowd forming...Diane and Joey and my father were already there. Arleen and Lorin brought egg salad, rolls, and cucumbers for my mother to eat (yum!) and Lorin, of course, made my mother a smoothie.

My mother's room is small, so we ended up transferring her to a wheelchair and bringing her down to the sitting area to entertain visitors. Gail and Steven also joined the crowd, and they brought my mother chicken salad from Panera. She was there for a little while before she had to attend physical therapy. While everyone kept Micah occupied, I joined my mother for her therapy.

I was a bit frustrated to learn that this therapist (who is not my mother's primary therapist) thought my mom was paralyzed on her left side...and had not been bothering to work that side much. I had my mother demonstrate that she had significant use of the left side, and explained that she suffers from neglect (the brain forgets the left side) not paralysis. Another problem - apparently, they think my mother is unable to keep up with the exercise because she tends to close her eyes a lot. The minute they lay her down on any equipment, she closes her eyes. I think some of it is her vision, and some of it is comfort. I also noticed that the minute she closes her eyes, they ask her if she wants to rest, and she responds "sure." I think my mother believes she is cooperating with whatever they want her to do, but they think she is quitting or too tired to go on with the therapy. Again, I explained to the therapist that she was agreeing with him, not in need of a rest. He worried about her and put her on a heart monitor - he thought she was faint or weak. Once he realized that she was fine, he pushed her a bit harder - she sat upright for over 10 minutes.

I told him that she had been walking at Hopkins with support - that the biggest challenge with walking was keeping her left leg from buckling, but that she had a lot more strength and needed help utilizing it. After speaking with him, I think they have not done such a great initial assessment of her capabilities, and now I'm even sorrier that I did not go up to Levindale in the mornings last week to meet with the therapists. I need to figure out how to switch shifts with my father so that I can be there to meet the therapists - someone from the family should have been there during the evaluations. I know that we will get to meet with them on Tuesday for a "care plan meeting," but we will be almost 1 week into therapy at that point. As we have learned from our experience at Hopkins, our ability to get any more time extended in therapy depends on these evaluations, and right now they do not think my mother is capable and participating in therapy.

After my mom's therapy session, we went back upstairs. My friend Heather joined us for a visit, and we had a nice time. My mother went back to her room briefly, and then they brought her back out to the sitting area. The therapist had asked me to keep her in the chair for another hour after therapy. From the moment she came back upstairs, however, she kept asking to go back to bed. I know she tires, but for the most part, my mother wants to go to bed because she is anxious and afraid - she has become fearful of being anywhere but in bed. That is perhaps our biggest challenge right now - she just cannot stay in bed all day. It is bad for her physically, and the more time she stays in bed...well, the more time she wants to stay in bed. After her surgery, she was able to be seated all day long, and was more interested in getting up and about. Now, she spends most of her day lying down - it is moving backwards. She says she wants to travel and do things when we get home, but if we cannot convince her to attempt a day out of bed, well, she will never be able to do any of the things she wants to do. I am worried that there are 2 more weeks left before we are even thinking of taking her home - and if she spends those next 2 weeks lying down, she will become weaker and weaker and become unable to leave her bed. She still has plenty of time left to live, and I'm starting to feel like she is sitting around in bed waiting to die instead of living during the time she has left.

I know that sounds like a harsh statement, but I'm frustrated. Every day, she asks me if I've brought her the things she wants in her coffin. Every day. Her latest obsessions are a picture of the family and the afghan from the family room. Today she asked me for the afghan about a dozen times, including several times when we had visitors present. When I ask her if she needs it because she is cold, she says "No, to take it with me." Instead of being in the moment and interacting with friends, she was asking me to bring her things for her coffin. Aside from the fact that there will be no room for her in her coffin with all the things she wants to take with her, or that her family might want some of those things to keep here with us so we can think of her and hold her close, I don't understand why she needs those things NOW. If it will bring her comfort, I'll bring her those things from home, but this is not about comfort. Frankly, I don't think that Levindale is the ideal place for her cherished personal belongings - things go missing, get ruined or soiled and lost very easily there, and I would rather save the afghan for her use when we bring her home. But, my mother keeps trying to pack her bag to die, and I am frustrated, because she is not dying yet.

There is a line from the movie The Shawshank Redemption that seems appropriate to me right now...Morgan Freeman's character says it a number of times, but the critical moment is after he is released from jail and is contemplating suicide. He says there are two choices, to "get busy living, or get busy dying." I think my mom needs to make a choice here, and it is time for her to get busy living. I'm not saying she doesn't have things to decide, but we've done most of the big things already (like funeral planning). And now is the time for her to LIVE the rest of her life, not wait to die. How do you help someone live the life they have left?

By 3:45, my mother was unwilling to continue sitting in her chair - we made it 45 of the 60 minutes she was supposed to sit. She transferred back to bed and just sat there, not really talking, for the rest of the afternoon. Elliot showed up around 4:00, and we kept the children busy. By 5:30 or so, we were packing up to leave for home. Elliot took the kids and I went with Heather out to dinner. It was my first child-free dinner in...well, probably more than 3 months. We just grabbed a quick bite of Italian food for dinner, and I got home in time to nurse the baby and help put Micah to sleep. Both children cooperated, and we had a quiet house by 9:20 again.

Tomorrow, we have our appointment at the Wilmer Eye Institute - I am hoping that they can do more to improve my mother's vision, and possibly offer up some therapies - even just mobility and orientation training (which would help her orient herself with her more limited scope of vision). I think tomorrow will be a long day for my mother between the early morning appointment and the radiation. I hope it goes smoothly - with so many hours away from Levindale, I'm concerned about them remembering to give us all of her medications and getting them administered as needed. Missing doses can really cause some issues for my mother.

Most of the week, they plan my mother's therapy in the morning. We then head to Hopkins around 12:45, and my mom is usually back by 3:00. Visitors are welcome to stop by...I would guess that after 3:00 most days is really the best time to catch my mom at Levindale, but she does have some time in the mornings and lunch time.

9:00 and All is Well

Wow...9:30 pm, and I'm home and have 2 sleeping children. I feel like the luckiest person in the world! I'm sure this bliss won't last (Maya has not been cooperative about bedtime the past week), but I thought I'd take a few moments and try and blog now.

Once again, Maya woke up extremely early again today - 7:00 am. I was still downstairs, trying to finish up my post, so please excuse all the typos - I was trying to type one-handed while I fed the baby. Maya and I snoozed on the couch for a bit, and Micah woke up around 8:45. We took care of breakfast, dressed the kids, and Elliot took Micah to services while Maya and I drove up to Levindale.

I spent most of the trip trying to figure out tomorrow with my brother and sister-in-law. Elliot is leaving at 6:00 am, and I will have the children by myself all day long. I was toying with the idea of leaving him with them for a few hours, but that is turning out to be much more complicated than I thought. Instead, I'm going to try and handle them on my own. It doesn't sound like that big a deal, but I'm a bit concerned about managing Micah and the baby during my visit with Mom. I guess we'll see how it goes. There should be a few other hands around to help keep Micah in check, and if he melts down, I'll just have to leave early.

When I arrived at Levindale, Jeremy, Jen, Paige, Peyton and my father were all there in the cafeteria with my mother. We joined them and spent a bit of time together. After an hour or so, my mother said she was tired and needed to go back to bed. Jen, Jeremy and the girls said goodbye, and my father and I took my mother back to her room.

Today, my mother was complaining a bit that the skin on her head hurt. This is a common side effect of radiation - the skin can feel a bit raw and burned. We requested some cream, and they have placed an order for Aquaphor to rub on her head. We will start applying it daily after each radiation treatment to try and help the skin heal. We will ask the radiation oncologist if there is anything else we should use on Monday. Additionally, I noticed yesterday (and today) that my mother's hair is starting to fall out. By the handful! I was stroking her hair today, and it was coming out in clumps. I think she is going to look gorgeous bald! She keeps joking that she now has a big "C" on her head (the scar from the surgery) and she'd like to draw a matching mirror-image "C" on the other half of her head...maybe make them look like the Chanel or Coach logos...then paint her scalp gold or other vibrant colors. I might just have to get some fun sprays when radiation is done and she has a chance to heal up. Perhaps just in time for Halloween!

After we returned to the room, my mom had a few visitors...Suzette, Joel, Bonnie and Pat! Pat brought an amazing gift from my mom's co-workers...several different gift certificates! Thanks to all of you at the Montgomery College Libraries who participated (and also for the beautiful flowers that were sent to us back at Hopkins). We'll use them to bring in some good food for my mother while she is at Levindale (we are already planning to bring her a chicken salad sandwich from Panera tomorrow).

Pat, Bonnie, Suzette and Joel had a wonderful visit. The best part for me? I got to sneak away for about 45 minutes without Maya to go visit my friend, Jen, who is currently on bedrest in the labor and delivery ward at Sinai. I returned around 4:00, just in time to say goodbye. I stayed for another 45 minutes or so (just long enough to feed Maya and give her some more cuddle time with Mom). Dad stayed behind to help Mom with dinner.

When I arrived home, Elliot and Micah were still out. Today was Taste of Bethesda...I had forgotten all about it, and I'm sad to say that I missed it this year. After services, Elliot took Micah over to the open house at the Bethesda Fire Station and he got two balloons and a fire hat! Then the two of them went to a bbq at one of Elliot's friend's houses. They came home around 7:00 pm, and we spent the rest of the evening relaxing together. Micah wore his fire hat and played with the balloons most of the night, so I think his visit to the fire station was a smash hit!

Perhaps the best part of my day...Micah actually said "I love you, Mommy" today! It was prompted...I said I loved him, and then asked him if he could say "I love you, Mommy" and he said it right back to me (followed up with a hug and a kiss). That has to be one of the most beautiful things I've ever heard! I then asked him to say "I love you, Daddy" and he did that, too. Maya also hit a big milestone today...she was able to hold a sit!! She was sitting up for about a minute - I could not believe it. Micah was definitely older before he was strong enough to hold a sit - maybe 4 months or so before he could hold a sit briefly.

Overall, today was a good day. My mother seemed to be in good spirits and feeling well. We had a wonderful day with visitors, and I actually got home at a reasonable hour, spent some time with my children, and now have a quiet evening at home with sleeping children. Why is it that I'm waiting for the other shoe to drop? Hopefully, they'll both sleep through the night, and Elliot won't wake them up when he leaves at 6:00. I hope tomorrow is another good day!

The Marathon

Often, I think events in life are best compared to a marathon, not a sprint - it is all about endurance. Marathon runners talk about the different phases of the run. At the start, the task can seem overwhelming; it takes the first few miles to feel out the road, loosen up, and get into a groove. During the next phase, they coast on autopilot, able to find comfort in the repetition and steady nature of the run. Somewhere towards the backend of the run, they hit a "wall" - mentally and physically. It always seems impossible to continue beyond the wall - it is the moment when many runners quit. But the thing about the wall is that if the runner can figure out how to push past it, they usually find their second (or third) wind to carry them on to the home stretch. It isn't always pretty - sometimes they need to slow things down or even walk, but getting beyond the wall is all about determination and willpower, refusing to quit.

I think this week, I might have hit my "wall." The daily grind of the trip to Baltimore and back, the screaming baby on the trip, the frustration of the move to Levindale and starting all over again with the nurses and doctors there...some days, it feels like this bad period will never end. Most people tell me to stop...just give up on the run because it is "too hard" or "too much," but, like most marathon runners, I know that if I just hang in there and push through the wall, I"ll find that second wind, and when I reach the finish line, I will be proud that I hung in there.

I have definitely missed the staff at Johns Hopkins this week...while I did not always trust the doctor there, or agree with his decisions, the nursing staff was incredible. I felt comfortable that they were administering medications on time, that they cared about my mother, and that she was getting the attention she needed. I especially knew not to worry if Donna, Jeanette, or Philadelphia were around - they made sure to give my mother some personal support and comfort, too, and I think we have yet to find that at Levindale.

Today was overall a good day. Maya woke up around 8:30, and I nursed her. Micah woke up a little while later, and Elliot got him and brought him downstairs. We fed him eggs for breakfast, and we all hung out and watched a little tv. Elliot had decided to cancel our babysitter, Christin, for today so that he could bring Micah to synagogue for Simchat Torah. After Elliot and Micah left, Maya and I got ready and drove to Hopkins to meet my parents.

While I was waiting for my parents, I received a call from one of my mother's cousins, Bernice. It was wonderful to hear her voice, and I had not spoken to her in many years. She told me some stories of my mother and grandparents, and I was in tears as I thought about them and missed them terribly. I promised her that I would have my mother call her back to talk later in the day.

My parents arrived as I was finishing my call with Bernice. Radiation went quickly again. Elise stopped by for a quick visit, too. My mom was also asking questions about going home, so we had another discussion about our plans for that. While we were there, I sent my brother a text asking if he new the radiation tech's friend...turns out, it is the person my brother supervises! Small world.

We all headed back to Levindale, and we arrived there around 3:00. I had a chance to speak to the nurse coordinator again to clear up a few more concerns, and I got a copy of my mother's therapy schedule for the weekend. She has therapy at 11 and 1:30 on Saturday, but is free the rest of the day, and Sunday therapy is in the morning.

My mother was quiet again most of the afternoon. We chatted a bit, she called her cousin Bernice, and we took some video of her with Maya. She gave a bit of advice, and she talked a lot about how much she loved her (and the other grandchildren) and she told us what she wanted for them. I hope that we can make more videos of my mother - I think she has things to say to all of us, and I know that I will value seeing her speak and hearing her voice in the future. When my mother was doing her video with Maya, I realized that she called Maya sweetie pie and baby cakes - two of my nicknames for her. I realized that most of the things I call my children I stole from my mother...boo, punkin, sweetie pie, baby cakes, bug. My mother used to always call me "bug" (short for love bug) or punkin (a play on pumpkin pie). She would say "whatsa matter boo" or "whatsa matter bug" when I was crying or upset, and she would say "c'mere babycakes" when we cried. I guess from all the years of hearing her say that to us, to the babies, etc., I stole it all from her.

I stayed with my mother until dinner time, and left around 6:15. The ride home was a little longer today, but not terrible. Micah, Elliot, Maya and I had a nice evening together. Micah is getting so big - he now says "uh uh" and shakes his head "no" when he does not want something. I probably taught him that accidentally.

Maya has had a rough night...she just does not want to go to bed anymore. I nursed her to sleep at 9, but she woke up again. She fell back asleep around 10, and we put her in the swing for a while before moving her upstairs. She woke up early this morning, and I'm late posting the blog becuase I've been nursing her.

I guess I can say that it feels like I might finally be pushing through the wall. In my head, I've started the countdown. Thirteen more days until we can try and bring my mother home again (or at least bring her back to Montgomery County). Twenty-five if they choose to extend radiation. In that time, we have to finalize renting a place and line up caretakers for my mother. I think we need to start making phone calls and conducting some interviews, and generally getting ready. We need to have an address so that the equipment we need can be ordered and delivered.

I hope it is my only wall. I know I have the home stretch in sight. We just have to hang in there a few more weeks to get there. I have no illusions about what will happen when we get home. What I do know is that we can stop all the driving, that we can give my mother one-on-one care with someone we can educate and my mother can begin to trust, and we can all start feeling better knowing we are together again. As my mother said today, her whole body just relaxes when we walk in the door - she physically feels better just knowing we are there. The thing is, so do I. I worry that Mom is scared, or that she cannot find her call button, or that she is in pain, or that the nurses do not know the routine and are messing up her medications again.

There have been many times in my life when this comparison has proven quite apt...especially now. I can remember my mom telling me at challenging times in my life that bad things always end...you just have to hang in there long enough for them to run their course. They don't always end the way we want, and we cannot always go back to where we were, but life constantly moves forward and changes, and there are always new and good things ahead. So, I'm hanging in there...waiting for the new and good things ahead.

I also just wanted to thank a few people this week...Rochelle & Scott for sending a beautiful bouquet of flowers to my mom at Levindale, and Tammy who sent us cookies, and my friends Dorann, Dawn, Ellen and the Stephanies who have bought me a block of "me" time.

News

The saying is "no news is good news," which I suppose makes today a good day. I haven't heard anything about my mother overnight tonight, so I hope that means she is having a good night.

I never made it to bed last night...after all of the commotion, I sat on the couch waiting for the last call from my father that he made it home. When he didn't call, I started to worry, but I was afraid of calling him and waking him up, too. I turned on the tv and sat and watched for a while. I must have dozed off around 7:30 or so, and the baby woke up around 8. Elliot brought her downstairs to me, and I slept on the couch a bit while nursing her. Micah was still asleep at 9:00 when Megan arrived, and he slept another fifteen minutes.

I made Micah eggs for breakfast, and he actually ate most of them. Megan helped me get the children dressed, and watched them both while Elliot and I showered and got ready to go. It was raining and disgusting outside, so Megan decided she would take Micah over to Laura's house for the day to play with Merrick and Addie (my friend Niki's children). After they left, Elliot, Maya and I got in the car and drove to Hopkins.

I got an interesting phone call this morning from a company who provides private companions and nursing aides at Levindale. We talked for a bit, and I asked the man to send me information - if my mother is repeatedly having issues, we may need to send someone to help in the evenings/early mornings, or possibly overnight. The company also provides caregivers for the home, so it is never a bad idea to have the name of a service.

The weather was terrible, but we still made it to Hopkins in good time...before my parents. Along the way, we learned that Jeremy would not be able to join us for a visit today...he was handling a huge flood in his basement. Ugh!! We tried parking at the valet service at the Cancer Center today, and it went smoothly. We waited in the family waiting area for my mom to arrive, and they got there around 1:35 or so. We were able to chat for a bit before the treatment. My mom seemed comfortable - no intestinal issues - and she was sitting up straight and doing well in the wheelchair. My dad had requested a Tylenol for my mom before they left, and that seemed to be helping, too. They took her back around 1:50, and we called for the return shuttle. Treatment went quickly again, and we had a moment to check in with the radiation nurse. The radiology techs asked us if mom would be doing an extra 7 days of treatment, and we were surprised. Apparently, it was authorized in the computer as a "possibility" but both the doctors and the nurse had previously told us mom would max out on treatment after 4 weeks. We will see how it goes, but we'll do every minute of treatment they suggest, especially if mom continues to tolerate it well.

In other good news, my father told me today that their long-term care insurance received the paperwork and actually authorized my mother, effective immediately! No waiting period, no arguments...we can now make claims against the policy for anything we need that is not covered by insurance, so that is a huge relief.

After radiation, we decided that I would ride back in the transport with my mother and my father and Elliot would drive separately with the baby. Traffic was heavy, but we made decent time getting back to Levindale. Much to my surprise, my mom was willing to sit in the wheelchair for a bit longer after we returned.

Just as we got back to her room, the nurse coordinator and the social worker approached us to set up a meeting to discuss some of the concerns we had and how we can develop a plan to improve my mother's experience. I have to say, I was impressed. It is not often that facilities come to you when there are problems - it is often a battle to find someone there even willing to talk! I had planned on reaching out to the nurse coordinator this afternoon, and it just made things easier when she came to us.

My mother, father, Elliot and I met with them for about 45 minutes. My mother was able to express her concerns, we were able to discuss the medications and insist that the nurses administer the medications (even the ones written "as needed"). We talked about the different consults we were expecting, and we devised a plan for moving forward. In addition, we had the opportunity to talk about my mother's vision loss, and ways we can set up the room to make the experience a little less scary for her. They immediately agreed to help - first by changing the nurse call button in my mother's room to something easier for her to find and operate. Second, they agreed to move her either to the "A" bed in the room (near the door) when one opens up or into a private room. From the front of the room, my mother would be able to see the door and the clock - both things that would make her stay a little less frightening.

Elliot and my father left shortly after the meeting, and I stayed behind with my mother. On the way home, Elliot detoured my father to pick up one of our building permits from WSSC, so it looks like we are fully authorized to start renovating the house now.

Mom slept most of the afternoon - not surprisingly, she was tired after the long night she had. The afternoon was relatively quiet as my mother slept. I was surprised that she did not have any therapy sessions scheduled - I will be looking into her schedule tomorrow, and trying to figure out how much therapy she is getting and what times (and see if they will give us a daily sheet).

Things seemed to go a bit more smoothly in the afternoon. The nurse today was nice (but I had to correct her several times on HOW to apply some of the medications). They seemed to remember and bring all of her medications (some a little late), but everything was being given. All I can say is some nurses don't seem to follow directions - today's nurse actually took a suppository, opened it up, and tried to use the medication as a cream instead.

The best news of the afternoon? Maya laughed! Not just a smile and a silent laugh, but a full-out rolling giggle with sound (and even a snort). It made my heart sing, and Mom was able to listen to her, too, and it gave my mom a huge grin. It is so wonderful to watch Maya's personality emerge.

My mother's dinner arrived around 5:30, and I left around 6:15. Once again, I made it back home in under an hour. Elliot and Micah left for Simchat Torah services tonight - Micah was adorable as he left the house clutching his Torah. During dinner, I sang to him a few of the Simchat Torah songs ("Torah, Torah" in particular) and he was clapping and singing, too! While they were out, Maya spent time playing on the floor - she was chatting and laughing and moving all about, and it was wonderful to see her getting that time to explore.

My mother called this evening to tell me that all was well. She was a bit confused about the time of day - she thought she had just woken up and was ready for therapy. I explained that it was nighttime, and that I had left about 2 hours before and would be back in the morning. She said she was fine and would see me in the morning.

It was immediately bedtime for Micah when they came home, and I had already put Maya in her pajamas and swaddled her tight. Micah cooperated with bedtime, but unfortunately, Maya did not. She fell asleep initially at 8:30, but she just would not stay down. We tried moving her at 9, and again at 9:30, and again at 10. All she wanted to do was snuggle and nurse. Finally at 11, I gave her to Elliot and said I was done nursing her because she was no longer hungry and I was too exhausted to do it for another minute. As long as Elliot stood and walked with her, she was quiet, but she certainly refused to go to sleep. I think it was around 12 before she finally crashed. Her schedule has been out of whack since the late night transfer to Levindale. I hope we can get her back on track soon.

I'm hoping to go visit my friend at Sinai hospital tomorrow...or possibly this weekend. I cannot bring the baby over, so I have to go at a time when someone is around to keep an eye on the baby. My next big hurdle...Sunday. Elliot is going to be gone from 6:00 am until 4:00 pm, and I have to figure out how to take care of 2 children all day and visit my mother. I may need to take Micah to Jen and Jeremy's house and leave him there, if we can figure out how to plan that with their babysitter.

Oh, and if you are still out there, keep the messages coming! We are still reading the Journal and your messages to my mom each day, and she loves hearing them. In fact, we have more time each day with the transport to and from Hopkins. She is also receiving visitors again. I do not know her exact therapy schedule yet, but evenings are definitely good, and there is probably time during the day, too. We are gone Monday through Friday from about 12:45 until 2:45 for radiation, and weekends she just has therapy (although far less than she had at Hopkins each day). There are a few guest areas, and if there is more than one visitor, we should be able to move mom into a wheelchair and go sit there.