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Letting go

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Just as I think I might have things under some semblance of control…G-d laughs again. My mom only woke once overnight last night, around 3:30 am. I helped her out and went back to bed. Thankfully, the children were good and slept until after 8:00. My mom woke up first, and my Dad got her some granola to tide her over until Betty arrived. Unfortunately, my Dad forgot to take my mother’s blood sugar first.

I let Micah sit in bed a few minutes longer, and Dad said he’d get Maya while I helped Mom with her meds. Micah managed to sneak into the room…and steal Mom’s applesauce. I ended up putting him at the dining room table with a spoon and some applesauce.

Betty arrived promptly at 8:30, and I did my best to get things moving – I had both kids awake, I fed Maya, I gave Micah breakfast, I picked out an outfit for Micah, and I made Mom’s breakfast. I started to become impatient…Mom needed to be out to the table to eat her breakfast quickly so that she could be ready for her physical therapy appointment at 9:00. Unfortunately, it was almost 9:15 before Betty got Mom out of the room and at the table, and Mom ended up missing 30 minutes of her therapy appointment.

At 9:15, I realized that Megan had not yet arrived. I went to my phone to give her a call, and I saw a text from her telling me that she had a family emergency and would not be able to make it today. Dad had already left for the day, Elliot had a meeting, and I just did not know how I was going to get Micah to class and juggle everything else without more help. I tried in vain to get Micah ready and out the door on time, but it became evident that we were not going to make it to class today.

After Mom’s therapy, she wanted to go back to her room for a few minutes to finish getting ready. At 10:30, her former co-workers Bonnie and Harriet arrived for a visit! They brought us fresh fruit and a bulghur wheat dish that looked delicious, and an adorable book for Micah. Mom sat and chatted with them for a while, and then there was a knock at the door. When the woman walked in, I was confused, because I thought Mom’s occupational therapy was not scheduled until Friday. Turns out, she was there for Maya from the Maryland Infants and Toddlers Program, and I had completely forgotten that she was coming.

We headed downstairs (with Micah, too) while my Mom continued her visit, and she did her evaluation of Maya. Maya is doing great (no thanks to the program). She is at or ahead of her milestones, and she has made significant progress with her sucking issues. We just need to improve her bottle feeding skills (she is still struggling with bottle nipples). We scheduled one more appointment, and then I think she will be released from the program. I did ask her about Micah and whether he should/could be evaluated more specifically for sensory perception issues. She did notice a few behaviors while she was there, and we discussed our family history with ADD, but I have a feeling they won’t do much at this time.

After our appointment, I nursed Maya and took Micah outside to play for a while in the back yard. I then brought Micah inside to watch an episode of Sesame Street while I headed upstairs to prepare lunch for my mother. Maya was cranky, and my father arrived back home to try and help out for an hour or so. I sent him downstairs to keep an eye on Micah, and I tried my best to pacify Maya while preparing lunch. Mom and I had more vegetable soup from Sheila, fresh fruit, and of course Mom topped off her meal with a bowl of chocolate ice cream.

I was struggling with what to feed Micah for lunch…so I decided to take the easy way out and I gave him a stick of cheese while he watched tv. After he finished the episode of Sesame Street, I gave him some crackers and fruit, too. Immediately after lunch, I put Micah down for a nap, and Maya, too. Just as I thought I was getting some down time, Mom’s speech therapist arrived. Naturally, Maya woke up during the appointment, so she kept me occupied.

After speech therapy, Mom lay down for a nap. Micah slept for over 3 hours, and Mom slept for about 2 1/2 – 3 hours. I started to get a migraine, but Maya just would not give me a break and nap. I ended up getting a few phone calls…from Dr. Boccia and Dr. Holdhoff. We will be taking Mom to see Dr. Boccia tomorrow to have her platelets checked again, and then Dr. Boccia and Dr. Holdhoff will decide if my mother needs to go to the hospital for a platelet transfusion.

While Betty and I were sitting in the living room, I made a comment about having a migraine and wishing I could take a nap. Betty then told me that I was not taking advantage of her ability to help. She is probably right…I’m used to doing things for my mother, and I’m not fully comfortable letting everything go yet. It turns out, she was quite insulted that I did not let her take out the trash yesterday to help me out. I tried to explain that the trash issue had nothing to do with me…Elliot is a little…crazy…about trash. He is a recycling nut, and he really cannot stand it when anyone else takes out the trash. It is just easier to leave it for him than for us to take it out – he will end up digging through the garbage later anyway, and I can’t stand to hear the complaining about how it was done wrong!

Betty and I had a good conversation…she also pointed out that this morning I insisted on taking my mother’s wheelchair to the breakfast table. That is when I decided to be honest with Betty – I’m frustrated that she takes so long in the mornings with my mother and throws off our entire schedule. I took Mom to the breakfast table this morning because she was 30 minutes late. I had specifically asked Betty to delay the morning washing routine (since she had just washed Mom thoroughly before bed) so that she could get to breakfast early and be on time for therapy, and Betty disregarded my request. I thanked her for how caring and thoughtful she has been with my mother, but I expressed my frustration that she can be a bit rigid and prioritizes doing things in a pre-set order over fitting activities around my Mom’s therapy schedule. She kept insisting that my mother should be washed/bathed first thing in the morning, and I tried to explain that it was more important that my Mom eat breakfast no later than 9 because of her diabetes and medication restrictions, that therapy took precedence over morning ritual, and that it was okay if my mother needed to eat breakfast in her pajamas and dress and wash afterwards.

Betty did not seem to approve of that, and said that if Mom was going to eat breakfast in her pajamas, it should be in bed. This morning, my Mom explicitly stated that she preferred to eat breakfast at the table. We talked about the importance of therapy time, and Betty asked why we couldn’t move it later. I said that I would certainly request a later time, but that for now, therapy was early, and that my Mom could not miss any more therapy time because of morning routines that could be done later in the day. Again, I pointed out that most of Mom’s therapy was done in the bedroom, and there would be no real harm in doing therapy in her pajamas. I hope we settled things – I would like to rely more on Betty and let go, but I have to trust that she will get Mom to her appointments in a timely manner, even if it means setting aside her routines. I know that Betty’s heart is in the right place, and I know that this is a learning curve for both of us.

Shortly after Betty and I chatted, Elliot and my father came both came home. Micah woke up next, followed by my mother. Betty got Mom up and to the living room while we managed the kids. Around 5:30, Suzette showed up with dinner from our friends: Gail and Steven Niedelman, Suellen and Greg Kaye, Sharon and Eddie Klawansky, Roz and Jay Baxter, Suzy Starr, Diane and Joey Breslow, Sheila and Les Lichter, Faye and Barry Mertz, Elaine and Robin Wexler, Arleen and Lorin Luchs, Suzette and Joel Levine, Bonnie and Stanley Favin, and Pat Mehok and Kevin Hughes. It was an incredible feast, and our refrigerator is now overflowing with food! We had cheese sticks and fried zucchini, salad, eggplant parmesan, spinach and cheese lasagna, fresh fruit, and cheese cake for dessert. Mom, of course, could not survive the meal without her chocolate ice cream! I think we have no choice but to eat leftovers all day tomorrow.

After dinner, Mom was a bit exhausted. Betty moved her back to the bedroom, and started their nighttime rituals. Elliot and I spent a little time with the kids. Micah was running around, he rode his tricycle in the garage, and he kept running back to see Grammy. My grandmother’s friend, Mildred Cantor (Faye’s mother) called Mom tonight to chat. It was wonderful to hear Mildred’s voice again…I haven’t spoken to her in many years, but I used to call her house every New Year’s Eve to wish my grandmother a Happy Birthday. Mildred and Mom chatted for a bit, and it was bittersweet.

Micah and Maya hung out for a little while in Grammy’s room. Actually, they were so cute together – Maya kept looking for Micah and grabbing handfuls of his hair, and Micah would cuddle close to her, say “baby” and give her kisses. Micah went to bed around 8:15…as he left the room, he said “bye bye, Mimi” to Mom – it gave her a huge grin on her face! Every time Micah has been seeing her door, he waves and says “bye bye, Mimi.”

Betty left at 8:30, and my mom rested for a while. Micah went to bed easily, but Maya was quite difficult to put down again tonight. I went in to see my Mom at 10:00 to give her medication and put her to sleep. She woke up again at 1:30, and hopefully she is now back down for the night. Another good day…but I sure hope Megan is able to return to work tomorrow.

Searching for Normal

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Rough night, but good day. My mom was up at 1:30, 4:30 and 7:30 last night. Betty arrived at 8:30, and Megan at 9. I had another rough day getting Elliot to get up and help with the children again, but my Dad was doing his best to juggle them while I helped my mother.

I took Micah to preschool today – for the first time in a few weeks. He seemed to be having a great time, but he was very clingy – he did not want me to go more than a few feet away from him. After class, we returned home for lunch. I had just missed the nurse, who came to check my mother’s blood pressure and draw blood.

Micah was not much in the mood for eating – he munched on an apple, and I made my mother a tuna fish sandwich. My Mom told me that she spoke to her co-worker and friend Ruby, and that she planned to come by with couscous. My mom has been so excited that she asked me about 100 times today if I knew what time Ruby was coming by to visit. I think she wanted to save her appetite for the couscous.

Patricia was here cleaning the house, and she was a huge help – she managed to put a lot of things in order and help us with the unpacking, too. Megan took Micah out to run an errand, and I stayed behind trying to get a few things done around the house. After lunch, we took Mom back to her room for a bit of a nap. She made some phone calls and rested. Micah and Megan returned home, and Micah also went down for his nap. Megan spent most of the afternoon keeping track of Maya while I made a schedule for my mother, took care of a few appointments, returned some calls and emails, and did a bit of cleaning and unpacking.

Sheila arrived around 3:00…with vegetable soup for us! My mother has been looking forward to this soup since Saturday, and it certainly delivered. She came in and I gave her a tour of the house, and brought her back to chat with Mom. After a while, Betty brought Mom back out to the living room, and Dad arrived home, too. We all sat around chatting, and it was a nice afternoon. Sheila offered to help me get a bit more organized in the kitchen…and I gladly took her up on the offer! We pulled out duplicate food items, moved things around, unloaded 2 more boxes of food, and she helped me cull through some of the items to make more room in the kitchen. When we were finished, I definitely felt as if we’d made a dent in the kitchen. I think I can get the kitchen in order within the next few days.

Around 5:00, the occupational therapist showed up to work with my mother. They did some exercises and evaluations for almost an hour. While they were working, I reheated the soup from Sheila, and she stayed with us through dinner. The soup was DELICIOUS, and it was so nice to not have to think about dinner. Micah skipped dinner and watched Sesame Street. He had actually eaten a ton of peanut butter, so I was fine with that. He was singing along with Elmo’s World, and he was just adorable.

We ended dinner with apple pie and chocolate ice cream (of course). We got a call from the nurse who told us Mom’s bloodwork indicated that her platelets are low again. She will likely need another platelet transfusion, and we are going to see if her hematologist down here can do it instead of returning to Hopkins.

Sheila left after dinner, and we spent time with the kids hanging out. Micah drank another smoothie that Lorin had left behind…and he cried when it was all gone. Around 8, Betty took Mom back to the room to get her into her pajamas. Elliot, Micah, Maya, Dad and I watched Glee, and Micah was singing and dancing. He cheered “YAY!” at the end of each song. He was being so cute as he hugged and kissed us all, and he kept running back to check on Grammy – giving her kisses, signing (and saying) “I love you.”

Mom decided to stay in bed for the evening. Betty left at 8:30, and we left Mom in the room with her audiobook to relax. Elliot bathed Micah and put him to bed while I worked on getting Maya to sleep. Maya finally crashed and we placed her in the swing for a bit before moving her into her crib. So far, so good!

I returned to Mom at 10:00 to give mom her nighttime meds and put her to sleep. Luckily, both Micah and Maya were down for the night – I’m hoping for a good night tonight.

Today was much calmer…I got a glimpse of normalcy again, and I think that we will get into a routine in another week or two. It has been so nice having my mom around us, and I love seeing her and my father interacting with the kids. Micah is finally getting comfortable with Mom again…he used to be so attached to her, but with all this time away (ever since she got sick in May), he just has been more distant from her. But lately, he seems to be paying more attention to her again, and he runs down to her room to check on her and say hi. He also seems a bit infatuated with Betty.

I’m hoping for a quiet night!

Insanity

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Today was insane. I believe the definition of insanity is doing the same thing over and over again and expecting different results. That must be what I am doing…I keep thinking that somehow, the kids will cooperate, that everyone will nap at the same time, that the phone will stop ringing, that my fairy godmother will wave her magic wand…and that I will be able to magically tackle all of the tasks on my list while in a dress and singing to my talking animal friends. Okay, maybe not the magic wand or fairy princess part, but I do keep thinking I’ll finish my “to-do” list. I somehow thought that by coming home, life would settle down and become…maybe a bit boring. I thought with caretakers and babysitters I’d have hours of time to myself…time to rebuild my business, time to rest, time to catch up on the DVR. Apparently, I’m delusional, because I didn’t even have time to eat today!
Mom slept through the night last night…and so did the kids! Of course, I was up every hour or so checking monitors at some sound or another, mostly because I just couldn’t believe everyone was sleeping so soundly. Micah was the first one awake at 7:00 am. He spoke a few times (sounded like he was saying hi to his stuffed animals and asking for Elmo). I left him alone – I knew the minute he went screaming down the hallway with his toddler exuberance, there would be no more sleeping people in the house. By 7:30, Maya was making noise. I went in to get her and nurse, but I heard Mom calling for me at the same time. I asked Elliot to grab Maya while I went to my mother. I checked her blood sugar, gave her meds, got her some juice and water and a little granola to hold her until breakfast. I then went back to get Micah out of bed and nurse Maya.
I have to say, morning is NOT Elliot’s strength. I’m not a morning person, but he is just terrible in the mornings. He gets snappy and unhappy, and he does not understand why he should have to wake up and do…well, anything, most mornings. He grumbled something about Maya being cranky because I made him get her out of bed too soon, and something about Maya waking Micah (all wrong…he was just in the midst of a delusion that if I had not ruined his morning, the kids would have slept until noon).

I ran around like a crazed lunatic…trying to nurse Maya and make breakfast for Mom and Micah and search for Maya’s clothing (her basket of clothing has gone missing). Both of my parents had time to spend with Maya:


The phone was ringing off the hook with questions from nurses and Verizon and health care equipment companies. Betty arrived at 8:30, and I tried to take some time to give her a brief introduction/orientation while taking care of two screaming children. In the midst of all the madness, my father ran to the store…and I have no idea where Elliot was. I emptied the dishwasher and tried to empty a few more boxes in the kitchen and clear off the counter so that I could do some real cooking. Megan arrived at 9, and she helped get Micah ready and off to Kidville for his class.
While they were out, I started to work on cleaning up while Betty and my mother got to know each other. Unfortunately, Maya started screaming, and I had to divert my attention back to her. Then Betty had some questions for me about the routine and where things were located. Next thing I knew, there was a knock at the door…and the guy from the wheelchair company was here to see my mother’s chair. I have to say, he was not such a nice man. I asked him about my mother’s wheelchair and our impression that it was supposed to recline, and he nearly blew a gasket. He said no one told him about any reclining and if we didn’t like the chair, he’d return it and wouldn’t get us a new one (knowing full well he is the only person our insurance company authorizes to fit Mom for wheelchairs). We must have spent an hour or two discussing her wheelchair. In short, he basically told us we were S.O.L…they ordered this wheelchair, and there was no way to change the order.
After he left, it was time for lunch. My mom wanted peanut butter on a bagel (with a side order of pie and ice cream). Micah wanted…to throw his food on the floor. He got upset when he saw Grammy’s cup with a straw and he wanted one, too. I gave him a peanut butter and jelly sandwich, and he ate some of it. Right after lunch, Micah went down for his nap, and Maya was dozing on and off. I started to do some more cleaning…but the phone was ringing. We had all kinds of health care professionals calling us to make appointments with Mom and to be honest, my head was spinning and I didn’t have a chance to write it all down. Perhaps the best call of the day…a former client with a new project for me. I’m hoping that I can get things together in the next week and get back to working, because I really want to spend some time catching up on my work.
Suddenly, it was 2:00 pm, and my mom was thinking of taking a nap. She had mentioned that she also wanted to take a walk since she never made it outside yesterday. We decided that if we did not go out for our walk immediately, it was unlikely to happen at all. So, Betty, Mom and I bundled up and went for a short walk through the neighborhood.

I think we were gone for at least 30 minutes or so. When we returned, our friend, Joan Krauthamer, was there waiting for us!
Mom and Joan sat and chatted and caught up while Betty did some more unpacking and organizing in Mom’s room. Just as I was getting ready to do some more unpacking in the kitchen, the delivery guy from Apria Medical Equipment arrived. He needed to deliver a lift for Mom, and fix her bed and table. Not surprisingly, it turned into quite an ordeal. I think he was here for nearly two hours. Every time he thought he “fixed” the bed, we showed him that it was still broken. He was quite irritated, and after 3 attempts at fixing the bed, he finally replaced it. We had a minor snafu with the lift…first, we thought it wasn’t covered by insurance, so we nearly refused the delivery again. Once we clarified everything with the insurance company, he dragged it inside. As he was demonstrating how it worked…we realized it was broken! He had to drag that back outside again. Mom received a replacement table, too. By the time he left, he was quite irritated that the repair on Mom’s bed had taken such a long time. He and Betty were not getting along, so I ended up having to run in and mediate. At least he fixed the bed before he left!
Right after the guy from Apria left, Mom stretched out for a nap…only to have the woman from physical therapy come by at 4:30. They had a short session, but it seemed productive. Mom will have physical therapy three days each week – Monday, Wednesday, and Friday at 9:00 am. She was tired, but she seemed excited to start her therapy. In the middle of all of this, Megan left for the day, and I went back to chasing two unhappy children while trying to observe Mom’s therapy. Around 5:00, my friend Betsy and her daughter Becca stopped in for a visit. Micah and Becca played a bit, but Micah was NOT playing nicely. I ran upstairs around 5:30 (while Elliot monitored Micah) to check on Mom and start to make dinner. I had the baby in tow some of the time, she napped a bit, and then my father took her for a while.
Unfortunately, it was nearly 6:00 before I managed to make any real progress with dinner. I was busy hunting for pots and pans and trying to clear space and carrying Micah – it was a disaster! It also turned out that we were nearly out of a few of the key ingredients…we barely had any artichoke hearts, and we were quite short on the bulghur wheat. I searched the cabinets to improvise, and I decided that quinoa was close enough. Unfortunately, I forgot that quinoa takes about 20 minutes to cook. Despite everything, dinner tasted good…just a little different from the norm. Micah was unwilling to eat much…but he spent the evening sucking down a delicious smoothie from Lorin. I figured it was a passable dinner…fruit and yogurt, right?
Mom was too tired to join us at the table for dinner, so we brought her dinner in bed. Immediately after dinner, she wanted ice cream and granola for dessert. It was about 8:15 pm when she was finally settling in for the evening, and she closed her eyes and napped for about 1 1/2 hours. I gave her evening medications at 10 and Betty cleaned Mom up and got her ready for bed by 10:30. All in all, I think our first day working with Betty was a success.
We did a bit more cleaning around the house. My father was trying his best to be helpful…but he decided to put my very expensive Calphalon pans in the dishwasher! So, now I’m going to be in the market for a new set of pans. I went in to cry to my mom briefly tonight…I just wish I had more time free to do what I need to do, and I wish that sometimes my father and Elliot don’t do things to “help” like ruin my pots. His heart was in the right place…but my pots were in the dishwasher :(.
After the kids were in bed (Elliot finally got Maya to sleep and in her crib around 10:30), Elliot and Dad decided to work on assembling a few toys for the kids that have been sitting in boxes for far too long – a step stool, a bench and a toy chest. It was kind of fun to watch them working together. My father always loves putting that stuff together, and they seemed to do a pretty good job working together. I think Micah is going to be thrilled tomorrow morning!
My Mom just woke up briefly around 1:15. She was uncomfortable and needed to be repositioned. I’m hoping that she will rest comfortably and sleep through the night. I’m looking around and thinking that I might need to go back to unpacking – I don’t think I’m going to have another quiet moment any time soon, and Patricia is supposed to be here in the morning to clean. Right now, she can’t possibly do much cleaning with all the boxes and mess! I’m so frustrated that I don’t seem to be able to make any real progress. I know I would feel so much better if the house was in order and I could find the things I need. I don’t know how, but I have to get the kitchen unpacked and my bedroom in order over the next few days. And I desperately need to find my contact lenses.
Uh oh…I think we’re in for a long night. I was just getting ready to hunt for my pump, but Maya woke up crying. I think she is not going to go back down any time soon. I just asked Elliot to go in there…I’ve noticed that both kids seem to go down faster if Elliot goes in during the middle of the night wakings than when I go in to cuddle them. I have no idea why, but it really makes a huge difference.
Tomorrow I’ve got preschool for Micah in the morning, and Patricia coming to clean. I think we have an appointment with the home health nurse, and I have no idea what other things I agreed to do! I’m supposed to go to a board meeting tomorrow night for BBYO, but I’m just not sure I’ll be able to make it yet. And what I’d REALLY like to do is to get up, go pamper myself with a massage (I’ve even got a gift certificate I can use), a manicure, and a pedicure, and come home to a fully unpacked house and a prepared dinner, then head out to meet some friends to play mah jong. Perhaps next Tuesday….

Getting settled

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I wish I took more time to jot down my thoughts throughout the course of the day…I keep forgetting to record so many things, and I feel like I want to grab on to every precious memory right now. Today was another good day. I love having my Mom home with us. There are definitely big adjustments (more people, caretakers, more people making messes), but being together has been…nice.

My mom woke up briefly at 2:30 am again last night. Her nighttime waking is never an issue – she usually just needs something quick and easy and then falls right back to sleep. Unfortunately, last night, both kids were awake and screaming all night. Maya has been extremely clingy lately, and just does not want to sleep unless she is tucked in close to me. Micah woke up around 4:00 am screaming, so Elliot went in to sit with him while I kept Maya close. Turns out, Elliot forgot to give Micah his reflux medication, so it had him coughing and hurting all night.

Once we finally got the children to sleep, all was quiet in the house until 8:00 am. Mom woke up first while Micah and Maya (and Elliot) slept. I gave her some water and her morning pills. We took her blood sugar, and I asked her if she needed me to start getting her ready. She said she could wait for Krystal, and asked me to bring her some granola to tide her over until breakfast. Lately, my mom is obsessed with the Costco granola. She had three helpings this morning before we even ate breakfast!

Krystal showed up around 8:30. I prepared breakfast for my Mom while my Dad ran a few errands, Elliot, Micah and Maya slept, and Krystal and Mom did their morning routine. I managed to unload the dishwasher and clean up a few things, too. Micah woke up next, and I brought him out to eat breakfast with my mother.


After breakfast, I realized that we needed to get moving. Micah had swim class at 11, and we had a simchat bat (a baby naming) at 1:00. We ran around trying to find our things for swim class. I successfully located the swim bag, Micah’s bathing suit, and my bathing suit. I even managed to find a clean outfit to wear today! I again failed to find my contact lenses…that is my task for tomorrow. I could not find a clean outfit for Maya, so I ended up recycling the one she wore yesterday. She had fallen asleep, so I grabbed the outfit for Elliot to use later.

I love swim class – Micah has so much fun blowing bubbles and practicing his swimming skills. He was extremely excited to see Daddy up on the observation deck, too, and took a few “time outs” to wave and yell to Daddy. After swim class, Micah and I took a shower and got ready for the baby naming. Elliot and I had previously bought a gift…but could not find it in the move, so we ran to Target to get something small to bring until we find the “real” gift.

We had a great time at the naming. Micah ran around with two of our friends kids (Max and Sarah) and they had such a good time playing together. He is getting to be a really big boy, and it just amazes me. I ended up having a few fairly heavy discussions with a few of the other guests…a few of them have been through similar challenges and even the loss of a parent. I have to say, I shed a few tears, but it was also nice to know others who have been through the same thing.

We left a little after 3 and came home. My mom was asleep, and my parents had a nice day while we were out. Arleen and Lorin came by and brought lunch (and left behind a smoothie for Micah). We put Micah down for a nap, Elliot fell asleep, and Maya and I snuggled and snoozed on the couch together. I woke up around 5:15, and realized we needed to get things ready for dinner. We decided to keep it simple…just hot dogs for dinner. My father ran out to the store to pick up some hot dog buns, baked beans, potato salad and sauerkraut. I ate veggie dogs, and we had an easy dinner together. Tomorrow, if I can get the kitchen in order, I’m going to tackle cooking a real meal. My mother has specifically request our special vegetable cheese and bean topped bulghur wheat dinner.

My mother was barely finished with dinner when she was asking for dessert – a slice of apple pie and some chocolate ice cream. After dinner, we retired to the living room. Krystal took my mom back to her room to change, and then she settled in on the sofa. Krystal left around 8:45, Micah was in bed asleep, and my Mom decided to stay on the sofa until her 10:00 medicines. I tried to get Maya to fall asleep in her crib – we even decided to let her “cry it out” for about 10 minutes, but that didn’t seem to work. I brought her back into the living room to sit with us. We had recorded a show on national geographic on migration (Lorin recommended it to my Mom today), and we sat and watched it this evening. Actually, the cinematography was fabulous! There was a segment on penguins, and Elliot called me back in the room to watch.

Elliot and I have a joke about penguins. On our honeymoon, we went to South Africa. There are lots of penguins in Africa, and African penguins are known as Jackass Penguins. I thought it was funny…so we started joking about using the word penguin instead of jackass. Calling each other penguins (and doing a cute little penguin walk to imitate the penguins) became our little joke. I even bought him a penguin afghan as a Chanukah gift that year.

While Mom was watching tv, Maya was being difficult and refusing to go to sleep. I ended up putting Maya on Mom’s lap, and she sat there quite contentedly for a while. I took some time to do the dishes and clean up a bit, and I managed to put a few more things in the kitchen drawers.



At 10:00, we gave Mom her bedtime medications and put her to sleep. Elliot managed to get Maya asleep, and he put her back in her crib. No surprise…she started crying again. We gave her another 10 minutes to see if she would cry herself to sleep, but no such luck. Elliot went back in, flipped her onto her back, put in her pacifier, looked at her and said “You’re okay. Time to go night night. Daddy loves you.” She looked at him, got quiet, and he left. Much to my amazement, she stayed quiet and eventually fell asleep. I’m hoping we can keep her in the crib all night and she can sleep through the night.

Things seem to be going well for us. I am feeling free to leave, and we are slowly making plans. We have different therapies scheduled to start this week – Tuesday is physical therapy (here is a “small world” story – we were given our PT’s name, and both Mom and I thought it sounded familiar, but couldn’t place it. She called today…turns out, we DO know her – she is the mother of one of my brother’s childhood friends, and we just didn’t recognize her remarried last name) and Wednesday is speech therapy. We are going to a doctor’s appointment on Thursday, too.

For those interested in visiting, I’m thinking that morning time or dinner/early evening are probably the best times. My mom seems to nap for a few hours in the afternoons, and I would hate to disrupt her rest time.

Rolling…

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First full day at home…and I think things went extremely well! Mom slept well last night – she woke up only briefly at 4:30 am. I actually got a few hours of sleep, too. I took Maya to bed around 2, woke up with Mom at 4:30, and went back to sleep around 5:30 or so. I woke up a few more times briefly between 7 and 8 before waking up for the day. Krystal arrived promptly at 8:30, and my mother woke up shortly thereafter.

I gave mom her first set of pills, and then left while Krystal helped her get ready. I made breakfast for everyone…Mom, Dad, Elliot, and Micah. We sat at the table together, and it was a nice morning meal.

About 10 minutes after I changed Maya, I heard a loud explosion. Yes, she decided to poop in her clean diaper…AGAIN. Elliot always jokes that she likes a fresh bowl (for those of you who used to watch Ally McBeal, that is Elliot’s nod to Peter McNichol’s character, who used his remote device to flush the toilet BEFORE entering the stall because he liked a fresh bowl).

After breakfast, Dad went out to run some errands, and Elliot and Micah got ready to leave for services. Mom, Maya, Krystal and I spent the day together. I read Mom the blog, I made a few phone calls, we sat and chatted a bit.

The home health nurse arrived today to conduct the intake interview and start the process for Mom’s services. Mom will have weekly blood draws and monitoring through this nurse, and she will also have physical therapy, occupational therapy, and speech therapy. In fact, the speech therapist called tonight, and we have our first appointment with him on Wednesday.

While the nurse was here, Jeremy arrived for a visit. He was able to stay for a few hours, and we had a good visit. We gave him a tour of the house, and he did some entertaining of Maya. While he was here, Maya decided to show off…and she rolled over from back to belly for the first time!!




She did it several times, in fact, with a big juicy grin on her face. Jeremy was a pile of mush for his niece, and my mom kept talking about her chubby cheeks and juicy smile. After our wonderful visit, Jeremy had to leave to go in to work for a few hours.

Shortly thereafter, we had an interesting visit from the neighbors across the street – they stopped by with cookies to introduce themselves! I’ve never had neighbors be that friendly before. I couldn’t decide, however, if they were trying to figure us out. We moved in suddenly, we’ve had trucks back and forth, and delivery people with equipment, about 900 different cars in and out (not to mention the 4 cars we are driving), a nursing aide, a babysitter, and a home health nurse, so I can definitely understand their curiosity. They stayed about 15 minutes or so, and Mom had a chance to chat with them, too. I think they definitely asked a number of questions, but I tend to question people when they are so friendly! I’m not sure if I mentioned this before, but we learned the other day that our landlord failed to file the proper documents to make this a rental unit. I have a sneaking suspicion that our friendly neighbors across the street may have been the ones who reported her, but perhaps I’m wrong.

Elliot, Micah and my father returned home from their outings by 2:30 or so. Elliot immediately put Micah down for a nap (Micah was awake and chatting for over an hour), Krystal took my Mom to her room for a nap, and I managed to get Maya to sleep for her nap. Elliot disappeared downstairs (I assume he napped, too), and I surveyed the house. I’m not sure what my father was doing…probably in and out running errands. I knew that it might be my only chance to do some cleaning and unpacking…and I just couldn’t. I was so tired and just sick of unpacking. I stretched out my legs on the couch…and crashed.

I heard Maya wake up, and I went to go grab her, but Krystal got there first. I am ashamed to admit this, but I let her take Maya. I knew it wasn’t her job, and I just…didn’t get up. I slept for 1 1/2 hours thanks to Krystal, and it isn’t even in her job description to help with Maya. Elliot and my father were nowhere nearby, and without Krystal, I never would have gotten a nap today. I opened my eyes a few times and told Krystal I could take Maya, but each time she insisted she had her and to go back to sleep. And I did. I cannot even begin to thank Krystal for all of her help – she runs a little extra interference with Micah, she picks up and holds the baby when I need to help my mother with things, and she is always happy to help out. She has been unpacking and organizing things in my mother’s room, and she has had so many great ideas for getting us set up. She has perhaps been one of the most helpful people to me over the past few weeks, and especially the past 48 hours. So, thank you, Krystal, for all you do. It is GREATLY appreciated.

By 4:30, I was awake again and starting to plan for dinner. My father arrived home at 5, and I sent him back out again to pick up food for dinner. We ordered an assortment of Italian food (pizza, ravioli and eggplant parmesan), and it was a nice meal. I set the table and got everything ready to go. We worked on waking my mother up from her nap, and I got Elliot up and asked him to watch Maya. My mother was very confused…she always seems to think it is morning when she wakes up from her naps, and somehow, even when we tell her that it is 6:00 pm, she cannot understand how it is not morning.

When my father got home with dinner, I put the food out and Krystal got Mom ready to join us for dinner. My father woke Micah up from his nap, and Micah was NOT happy about that. After grumping for about 10 minutes, he dug into dinner with almost as much gusto as my mother.

After dinner, Suellen and Greg came by with a feast for dessert…chocolate chip cookies, rugelach, apple pie, and maccaroons. We had a great visit – Micah was running around, they brought a beautiful gift for Maya, and we had a lovely evening. My mom went back to her room around 8:30 and Suellen and Greg left. Krystal stayed a little while longer to help us get Mom ready for bed, and she gave me a few tips on helping my Mom. That has been invaluable, and I hope it makes things easier for us at night.

We decided to keep Micah awake until 9:00 for daylight savings in the hopes that he gets right back on schedule. Micah through a fit because he couldn’t play with the “say cheese” (his word for camera). I need to get tempting items like that out of his reach.

Mom dozed a bit from 9 until 11 when I woke her to give her bedtime medications. She immediately fell back asleep, and I hope she sleeps soundly through until morning. Even if she wakes up once, I’m fairly certain she’ll fall back to sleep quickly and sleep in a bit. I held her medications an extra hour tonight so that she can sleep later tomorrow morning.

We tried to put Maya to sleep at 8:30, hoping that she would start to fall asleep at a more normal time and that daylight savings time will just push her entire schedule a bit earlier. Unfortunately, no such luck. Maya has been asleep since about 8:40, but every time we put her down, she cries. She just wants to sleep snuggled close to someone. I wish I knew how to make her sleep in her crib, or anywhere but on one of us!

I think we are starting to get into a routine. We eat breakfast at 8:30/9, lunch at 12:30, and dinner at 6. It works for Micah, it works for Mom and her medicine schedule, and it is fairly consistent with the schedule she kept at the hospital. Of course, if you ask my mother, she’ll tell you that I need to do a better job of creating a consistent schedule. She thinks it was very outrageous to serve her eggplant parmesan for breakfast, and she thinks I’m going to damage her stomach with such crazy foods. She also thinks I need to do a better job of getting her to eat at normal times, because she shouldn’t have breakfast twice in one day. Yes, the confusion about time is a bit frustrating…no matter how many times I explain to her that she woke up from a nap and it was dinner time, she thinks I’m lying to her. It didn’t matter that I reminded her that we had breakfast and lunch and that eggplant was dinner – she somehow believes that I forgot to serve her dinner and then I gave her eggplant for breakfast. Logic just defies this situation. My mother ended our 8:00 session tonight chastising me about getting the timing better for meals…but I think I’m going to stick with feeding her (and the rest of us) at 8:30, 12:30 and 6:00 (with an afternoon snack in there as appropriate).

So, if you are planning to join us for a meal…please understand that the timing is fairly important, and while we might be able to fudge things a little earlier or later, we need to keep things on schedule for her medications and for the sake of her time disorientation (that, and mom does NOT like to wait for food these days).

So, after today, I made zero progress on cleaning up. I did get to shower, but I still have no idea where most of my clothing is located. I also managed to sort my mother’s pills into a pill container for the week, so that should also make things easier for us. I’m hoping to find more time tomorrow to focus on unpacking and getting organized. My goal is to have the kitchen, our bedroom and the rec room in passable shape by Tuesday. I’m counting down the days until Leslie returns…because I just don’t think I can get this house in order without a ton of help, especially when I spend the day with a child (or two) attached to me.

I asked Mom tonight if she was glad to be home. She is…she says she loves the freedom of going from room to room during the day, and she is looking forward to taking a walk outside tomorrow. She is making plans to meet people for lunch in the coming weeks, and she is loving the time with the kids. Personally, I love having her home, too. I can see her every day and talk to her when I want. When she is sleeping or busy, I can do my own things. Best of all, I don’t have to drive to Baltimore and back every day.

This week, I am looking forward to a bit of freedom. I plan to leave and go out to take care of a few things I’ve been putting off. I’m looking forward to some “me” time, and I finally feel like I do not need to feel guilty trying to cram in time for everyone during the day. I also feel like I’m on a more normal schedule. It looks like I’m on track to get to bed around 2:00 am for the second night in a row! I think it will take us some time to fully settle into our routine, get unpacked, and lay new ground rules for living together.

Thanks for your good wishes! We are doing well. I’m uncomfortable posting our home address on this web site, but feel free to call or email me and I will happily send it to friends and family. The phones should be working again…but we are dealing with Verizon, so it could all go haywire again. We would love visitors, but we do ask that you call ahead of time so that we can coordinate a good time (and avoid having too many visitors at once).

Free at last….

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Mom is home. After almost 11 weeks (76 days), she is finally home. It isn’t the home she left…it is in a new house, with different furniture, different decor, and suddenly more residents, but it is home.

Last night was a horrible night…between the move and the children, I was simply exhausted. I woke at 7:00 this morning because Maya was awake (my formerly “good” sleeper has become a terrible sleeper…either she has my genes, or it is just a phase). At 8:00, our mover showed up to find out that our phone lines were not working properly…and my babysitter, Christin, canceled on us. My father showed up at 10:00, and he and Elliot left to go pick up Mom at 10:30. I stayed behind to try and deal with some unpacking…but got worried when I realized that I was all by myself with two children for the day.

Luckily, “fate” intervened…my friend Laurie called and asked if she could come by to help for an hour or so (and bring bagels). I was excited for the extra help, so I gave her our address. I then checked email…and realized that our organizer, Leslie, was able to come by as well to help with unpacking. I could have started to dance a jig I was so excited! Both of them arrived around 11:30, bearing flowers for my Mom. Leslie did an amazing job combining them all into a vase for display. With their help, we made a lot of progress. We emptied all of the boxes in the kitchen, and then Laurie had to leave.

Leslie stayed behind and started to impose order on our kitchen…she put the pantry together, she started putting things into the cabinet, and she took charge of our linen closet. I took some time to vacuum in between chasing Micah around the house and cuddling Maya. I worked with Leslie on unpacking, and tried to keep Maya occupied so I could be useful.

I kept calling to check in at the hospital…Krystal arrived, they gave Mom a shower, they fed her lunch…and around 2:30 or so, they finally left the hospital. Micah had gone down for a nap (and slept for nearly 3 hours!!), but Maya would not sleep all day. I was in an utter panic…especially since our mover called a few minutes later to tell us that they were coming by with the last load of things.

Krystal arrived at the house first. It was great to see her again, and I gave her a quick tour of the house. She said the ride down was much easier than she expected, so I was relieved. Krystal has been such a help to us, and I hope that she will continue to work with Mom for a long time.

Naturally, they were unloading the truck when my mother arrived. Huge boxes were scattered all over the kitchen (where they remain) and the downstairs became a dumping ground. We had to quickly shove things out of the way so my mother could come in the kitchen. We had to experiment a bit with the ramps, but we got her inside. I finally got a look at my mom’s snazzy new wheelchair – it looks great! It is far more comfortable for her, fits her well, and is a bright green color (toxic green, to be exact). It arrived today, and it is far easier for my mother to use.



Mom seemed thrilled to be home. She was smiling, said the house was great, and she moved onto the couch to sit and relax a bit. It was already late, and Micah was definitely grumpy when he woke up from his nap. We put on some Elmo, and all was right in his world again.



We were doing our best to get situated. Leslie left around 5:00 today…we still have a lot more to do around here before I will feel settled, but I just did not have the energy to do another second of unpacking after my mother came home.


My father ran to the store to get some “necessities” like Breyer’s Chocolate Ice Cream and prune juice. While my father was out, we decided on Chinese food for dinner. Dad ran to pick it up, and we had a lovely feast! We all sat down together, talked, laughed, and it was such a great way to spend the night…at home, all together. After dinner, my mom sat with the kids for a little while before bed time. We got on track with her medicines, and I gave her the shots. I have to say, fertility treatments were GREAT training for this…my injections used the exact same pen I had to use, so it was quite familiar for me.

At 8:30, my mom decided to head back to her room and get into her pajamas. Krystal helped her out, the kids said goodnight (Micah even signed “I love you”) and we started to put the kids to bed. Mom napped for almost 2 hours. Micah went to sleep easily, but Maya has not wanted to lay down at all.

Mom woke at 10:15, so we gave her medication for the evening. Krystal left at 10:45, and will be back again in the morning. We are slowly making a list of things we need to purchase, but I think our first day went quite well. It is wonderful to finally have Mom home again. While so many things will be trying about our living arrangement, I think the best thing will be all the time my children will get to spend with their grandparents.

I sure hope that we can get everything unloaded over the next few days. For now, the living room, the dining room, the kids’ bedrooms, and my parents’ bedrooms are functional.

It is now 1:00 am…and Maya is sleeping on Elliot (but she cries every time he tries to put her down). I think I am going to try taking her into bed with me and calling it a night. I have some video of them leaving Hopkins, but I just don’t have the energy to post that tonight.

Thanks for checking on us! We are open for visitors, as long as you can forgive the disorder. Just focus on the living room…it looks great. You can definitely reach us by cell, and the home phone *might* be cooperating. My cell phone is not working properly – I can text, but I cannot use it for talking right now. We would love to have visitors this weekend, so feel free to call and come by!

Disastrous Move

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Today’s move…well, it was an unmitigated disaster. Suffice it to say that we are still not finished…I don’t even think half of the house was moved. I’m so exhausted, frustrated and angry about it that I cannot see straight.

The good news from the day…we worked out the commode issue with the hospital staff. It was one particular nurse who did not want to deal with it, but after I spoke to him at 3:30 am…I think he realized his attitude was a problem. Mom is definitely coming home on Friday. She seems to be doing well, but they have not identified the cause of her nausea/dizziness.

Our mover arrived late this morning…no real shock, since he is usually late, but I had asked him to be careful about time because I wanted everything finished by 7:00 for the children. He said “no problem.” He arrived at my parents’ house at 9:30 to pick up a few things, and then they headed straight for the rental house to unload. They were out of the house at 10:30, so I expected to see them at 10:45! We waited. And waited. And waited. And waited. It was 12:15 before they arrived at our Bethesda house. I was quite unhappy, but he assured me they would have everything finished.

I again reiterated the importance of being done tonight and early because of the children. By 1:30, they had the first load packed up, and we headed back to the rental house. The lead guy said he had to run a quick errand and he would meet us there. Unfortunately, that was the last time I saw him until after 7:00 pm, and the move went terribly wrong in his absence.

The guys unloaded the truck fairly quickly, and I did my best to quickly unpack as many boxes as possible. They were ready to head back to the house at 2:45. On our way back, they decided to stop for food. I made it home by 3:15, but did not see them again until after 4:00. Over the next 2 1/2 hours, things quickly deteriorated. I sent Micah up to the new house with Megan, and I realized they would never get everything finished.

They were packing up all the things I had asked to be left behind. I had spent HOURS sorting through hand-me downs and give aways, separating the clothes, and sorting maternity clothes for a friend who was pregnant…and they dumped everything together in one big box and put it on the truck! I was LIVID. They kept apologizing, but I was outraged at all the wasted time…both for them and for me.

All I know is that it took them 2 1/2 hours to pack up Micah’s room and our closet…one small closet, one big closet, and his furniture. I cannot for the life of me understand what took so long. It took them less than an hour to pack up twice as much stuff the first time around. In the midst of all of this, I was handling some other problems…mom’s equipment delivery. The hospital bed arrived…without the air mattress. The wrong commode was delivered, and the lift was incorrect. The other equipment was missing. We spoke to the social worker, and supposedly this will all be corrected in the morning. We’ll see – I don’t have a lot of faith in anyone getting these types of things right. We also learned that they were going to release her tomorrow, but later than we had hoped. There was a problem with her medicine prescriptions (thanks to Heather for telling me to check!) but we got that corrected.

At 6:30, they were ready to head back to the rental house. I was inside the Bethesda house, trying to nurse Maya, figure out what things I needed to take and how to get them in the car with the baby. I was overwhelmed. I sat in the house trying to gather myself for the next 20 minutes. I spoke to my parents and to Elliot, and I was so upset that it was so late and we were nowhere near finished. When I finally gathered myself, I realized that the guys had not even left with our stuff! They were still parked in the driveway. I yelled at them, went back inside to start pulling my things together, and then I left. I arrived at the new house around 7:00…and the truck was nowhere to be seen. It was nearly 8:00 before they arrived.

They quickly unloaded and left again, this time with Elliot to monitor the packing up at the house. Elliot also needed to head out to Gaithersburg to go pick up the ramps for our house, too. Since he was gone, I had to deal with putting two cranky children to bed. I went to Micah’s room, and I realized I had to unpack it first! I emptied 6 boxes while he watched Sesame Street. I made his bed, I hunted down his pajamas and medication, and I tried to make things perfect for him. Unfortunately, there was no way for Elliot to be back to put him to bed…and Micah much prefers Daddy at bedtime most nights.

My father showed up and kept Maya busy while I got Micah ready. He wailed and cried and hollered and screamed. I had to decide whether to let him stay up with me and wait for Elliot, or see if he could cry it out. I opted for crying it out…I hope it wasn’t too traumatic for him. He cried for about 45 minutes, on and off. Every time I thought he was quiet, he started again. A few times, I let him know I was here, but I thought that going back in to his room would just make it worse. My father left to go home sometime around 9:30 or 10, and Micah finally crashed. The baby intermittently slept and woke, too. Elliot got home around 12, and he still had to unload the car. I heard him setting up ramps, but I was asleep on the couch for a few hours, only waking to nurse and cuddle the baby a few times.

The movers never returned again last night. I have no idea if they finished packing up the house, or when/if they’ll show up with our things. We need our food and dishes, our offices, and our carpets. There is still an entertainment stand, 2 couches, an ottoman, and a glass table that need to come over, two more bathrooms that needed to be packed up, the kitchen, and we have to drive out to Germantown at some point to pick up a dining room table. I have a feeling a ton of stuff we were leaving behind is going to show up here, and somehow, the “important” things will be left behind.

I spoke to my mom a number of times today – she sounded better as the day continued. I know that Diane and Joey stopped by to visit, by I have no idea if she had any other visitors. I was a little caught up in the drama here.

All I know is that tomorrow I’m going to be racing against the clock by myself trying to unpack and put everything away here. I think Christin, our Friday babysitter, will be here to help with the children. My father and Elliot will have to go without me to go pick up my mother – I just don’t see how this house will be ready if I go, too. I’m frustrated – I wanted to be there to talk to the doctors, make sure everything was set correctly and say goodbye to everyone. I have a feeling a bunch of things will be a mess at check-out because I’m here. I am hoping that the health care company will drop off the rest of Mom’s equipment, and I’m hoping that the mover will show up with the rest of our stuff.

The only other good news today? Verizon delivered services as promised. We have working television, internet and phone service at the house. Elliot and I were able to port our home number to the rental house, so our contact information remains the same. My cell phone, however, is on the fritz…I cannot answer any calls right now. So, call me at home for now! I’m going to try to get back to sleep. My allergies are killing me…moving is not good for dust. We need to do a lot more cleaning in this house, too, but hopefully we can make it manageable for Mom by tomorrow.

Hospital, Moving, and SUBs

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I’m sure most of you are interested in an update about my Mom, so I thought I’d lead with that. She is doing well, but we still do not have an answer about what is going on with her. I don’t think she slept particularly well last night…she called me at 8:30, 10:30, 1:30, 5:30, and 8:30. Maya woke up again for the first time at 5:00 am, but she immediately fell back to sleep until 8:30. Micah woke up right at 9, and we raced around getting the children ready. Yesterday, we had the pest control specialist kill off the spiders in the house, so today, we asked Patricia, our cleaning lady, to meet me at the house at 10:00 to dust and vacuum and get rid of the spiders and cobwebs.

Because of this appointment, I did not get to Hopkins until 1:00. The nurse did a quick interview/exam of Maya, and then gave us permission to bring Maya back to Mom’s room for the day! When I arrived, there was a note from Elise that she had been by to visit, but Mom was getting an EEG. Sorry we missed you, Elise! I was able to meet with Dr. Holdhoff right when I arrived. He said that her MRI and CT scan both looked good, and he briefly discussed sending her back to Levindale tomorrow. I explained to him that it would not be in our interest for her to go back to Levindale for 24 hours, and he readily agreed. Instead, they will be keeping Mom at Hopkins at least until Friday.

Our biggest concern is that they have no explanation for why Mom is experiencing headaches, nausea and vomiting all of the sudden. They tried increasing her steroids…but there have been no improvements. We had hoped her symptoms would improve with the antibiotics to treat her UTI, but so far we’ve not seen any improvements. They did an EEG, but we had not heard the results by the time I left today. We have one possible theory left…they put Mom on an anti-anxiety medication almost two weeks ago, and it is possible that the nausea and vomiting are just simply side effects from that medication. I am a bit nervous for them to release her home without identifying the source of her new neurological symptoms.

Lately, Maya has become the queen of SUBs…and for those of you unfamiliar with this term, it was coined by our friends, Ellen and David, and it stands for shit up the back. It is the lovely situation that occurs in all babies when they manage to poop to such extremes that it explodes out the back of their diapers and completely covers their clothing. Naturally, Maya has been so kind as to SUB every day this week, at the most inconvenient times. Yesterday, it happened while we were in the emergency room (and I was so discombobulated that I had forgotten the diaper bag at home). I had to get diapers from the pediatric ER, but it was a mess…and I had no change of clothes for Maya. Even worse…she did it a second time, as I was leaving the hospital. While I was trying to convince a nurse that she was germ-free and safe to have back in the room visiting my mom. I had to take a paper towel, put it underneath her…and drive her home with a diaper oozing poop.

Of course, she decided to SUB again today…this time, I had the diaper bag, but no change of clothes. I had to creatively rinse out the poop from her outfit…and re-dress her in wet clothing. Lovely, right?

Tomorrow is moving day…again. I was counting earlier, and I think I’ve moved over 25 times since 1991. From 1991-1998, I moved at least 2 times every year…sometimes 3. In 1999, I purchased a condo, bought some heavy furniture, and “put down roots” for 3 years. Then I sold my condo and moved home for a few months while I searched for another place to buy. A few months later, I moved into a rental unit, then bought that a year later. I actually lived in that condo from 2003 until 2008. But, in 2006, we moved some of Elliot’s things into my condo. In 2007, we moved the rest of Elliot’s things out of his house. In 2008, we moved all of our things back into Elliot’s house. In 2009, we moved all of our things from one storage unit to another. In 2010, we moved the rest of our things out of my condo and into the storage unit. And here we are, moving all of our things yet again in 2010. I think when we move back into our house after the renovation, I’d like to stay put for a couple of years.

I truly hate moving – it was so much easier when everything I owned was portable and could fit into a minivan. We are so completely unprepared for this move. We have so much stuff, and we have completely failed to organize and weed through it. Nothing has a place, and I’d guess we should throw out half of the things we have here. Naturally, we’ll just end up moving the crap yet again.

Tonight, we also finally started packing. Actually, to be fair, we had the movers come tonight and spent a few hours packing, Megan packed up all of Micah’s toys during his nap, and Elliot spent the afternoon working with Leslie (our organizer) to get his office in order for the move. I’m not sure if we really made significant progress, but we did find the keys for the house today. They were exactly where I thought they were…but hidden under something. I swear I checked underneath there about a dozen times, but I guess I must have missed them. Doesn’t it always happen that way?

Tomorrow is the first day I will not see my mom since August 20. I have seen my mom every day for the past seventy-five days. I have driven to/from Baltimore for the past seventy-two days. It is at least 80 miles roundtrip, which means that I have driven over 5,760 miles in the past 2 1/2 months. My father has made the same trek, too, although a few days we have journeyed there and/or back together. Some days, Elliot has driven us. But each and every day, we’ve gone. But tomorrow, she will spend the day in the hospital without me there to check on her…to lay eyes on her, to knock any heads, to sort out any problems. I’m sure I’ll call her a million times tomorrow to check on her…but I won’t be able to see her with my own eyes. I keep trying to figure out if I can make it up there…but I know there is no possible way to move an entire house and drive there and back.

I’m definitely overwhelmed by how much stuff we still have to pack and move. It is going to require numerous trips back and forth, and I am definitely concerned about how I am going to coordinate the packing up at the Bethesda house (to make sure that the right things are packed in an organized fashion) and to simultaneously coordinate the unpacking on the other end at the Potomac house. I am worried about getting everything moved and put away in time to give the children a normal bed time/evening, and have everything sufficiently in place for my mother for Friday. I’m so used to relying on my mother when I move…she and I have the same sensibilities about where things belong. I can trust her to pack up any room, or unpack key rooms like the kitchen, because she would set it up exactly the same way I would. There is no one else that thinks the way we do, and this is the first time I have to move without the benefit of her assistance. That alone is going to make this my most difficult move yet.

On another note, my mom has been calling here on and off since 2:00 am. The nurse on duty tonight is refusing to put her on the commode…this is so frustrating! I already called and spoke to him, and I think he is reversing his opinion. I also sent a note to the doctor and hope he will address this issue in the morning.

But beyond that, I’m a bit worried about her – she was quite strange on the phone tonight. We were talking, but there was a lot of static and noise on the phone, and her voice was very garbled and difficult to understand. The last time I had this much difficulty talking to her on the phone was this summer, before we got her diagnosis. She kept telling me that it was because her phone was in her pocket. I asked her why she was putting the phone in her pocket while we were talking, and she insisted she wasn’t. She said it was there before the call, and she had forgotten to take it out. I told her that she could not have called me with the phone in her pocket, and she started to argue with me and tell me how I never believe her and how I must think she is stupid. No…I just know that in order to dial the phone, she has to take it out, press a button to activate the phone, and talk directly into the speaker. I also know that at one point during our call, she had it up to her ear, and I am concerned that she thinks it is normal to put a phone in her pocket mid-conversation. It is like she is forgetting we are on the phone and just putting it down mid-conversation. She has been doing that over the past two days, and it is striking me as another neurological symptom.

So, hopefully tomorrow things will improve with my mother. I’m definitely concerned…I know they keep telling me that everything is fine and that the tests look great…but something isn’t quite right, and I’m concerned that they cannot seem to figure out what is wrong. I’m also worried that I will not be seeing her in person tomorrow, and I have to rely on my father to communicate specific information with me – not his strong point. My brother will be heading over tomorrow evening, and I think Diane and Joey will be visiting as well. My mother will be alone all morning (probably until 12 or so). I hope she gets a few visitors, and I hope that they keep their promise and get her out of bed tomorrow. We’ve made far too much progress in her sitting stamina for her to spend all day in bed again.

Wish us luck with things! I hope it goes smoothly, and I hope that we can have everything moved over there and unpacked in a single day. I’m so worried about getting everything ready for Mom, and I have a sneaking suspicion that the kids will be a disaster tomorrow night in the new house, so finding the time to unpack is going to be a challenge.

Jessica

Bump in the Road

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It has been quite a day…mostly filled with a lot of tears and worry. My mom has been re-admitted to Hopkins. She is okay…stable, and mostly there for observation. We think this is more of a “bump” than a setback, but it still came as a bit of a surprise.

Over the past two weeks, my Mom has been listening to Tuesdays with Morrie in audiobook format. She spends a lot of time quoting from the book, and she has repeatedly asked me to read it again. Yesterday, I started to listen to the audiobook on my drive home…but I was in tears the whole way home. I think it just hits too close to home for me right now, and I’m really not sure that I can continue to listen to it at this time. It really is a wonderful book, but I think I’m far too raw to hear this story.

As my Mom and I talk, she always brings up the book in every conversation, usually by saying “Morrie says…” and quoting from the book. We talked about how “Morrie says” that this universe is too harmonious, grand and overwhelming to be an accident. We talked about the circle of life, and a few of Morrie’s theories on the birth-death balance. I told her that one of the things that touched me was the story Mitch Albom relayed about the day Morrie got his diagnosis. I don’t recall the exact quote, but apparently, he looked outside, noticed the world going on around him and felt like yelling “why is the world still going on when it feels like my world just stopped?” I think that is exactly how I’ve felt since the day we learned my mother had a brain tumor…sometimes, I just do not understand how the world is going on around me when I feel like my world has just…stopped.

Today, Mom wanted to know if she could steal a line (with a few alterations) from him for her tombstone, or if that would be a copyright infringement. It made me laugh, but I love that the book has touched her. According to my Mom, everyone should read the book. Now that she has finished this book, I might get her Mitch Albom’s book The Five People You Meet in Heaven to see if she likes that as well. I also recently added The Alchemist to the ipod, but she seems to be having trouble concentrating on that.

Last night was a rough night. The baby woke up at 5 and my mom started calling me at 6. She was dizzy and not feeling well again. I immediately contacted Dr. Holdhoff to give him an update. My mom called a few more times over the next two hours, and Micah woke up early, too. I called my father around 8:30 to give him an update, and we started to speak to the doctor at the nursing home to work out the plan of action. We were working on getting the nursing home doctor to at least call Dr. Holdhoff to coordinate the proper tests and hear the recommended procedures.

Micah woke up early, too, and my day was off and running. My father called to say he needed to take the car to be serviced and I had to go up to Levindale since he was going to be late. I raced around getting ready and had to send Micah to preschool with Megan instead of going with him. I got in the car, stopped to vote, and headed up with Maya to Levindale. I was there before 11:00, and it turned out, my father was already there. I have to admit, I was a bit ticked that he didn’t call me to tell me he was running ahead of schedule so I could have taken Micah to preschool and come up an hour or so later.

We spoke to the doctor, and he told us he was making arrangements for Mom to go to Hopkins. Jen, Paige and Peyton came by to visit Mom, but they arrived right at the same time as transport. We made sure Mom had her lunch, the girls said a quick hello, and we all headed out.

My father, Jen and I were all a bit teary – to be frank, we were concerned that my mother was dealing with a brain bleed or significant tumor growth. My Mom was quite clear that she does not want any more surgery. Consequently, we were all worried that this might be the beginning of the end, and we kept getting all choked up. We tried to keep it in check, but not always so well. I was frustrated about what this meant for her rehab stay. I really wanted Mom to have a few more days of rehab before we brought her home. We knew that if they admitted Mom to the hospital, her time at rehab would be over. We debated packing up her things before we left so that we would not need to return later, but ultimately we decided to wait to pack her belongings.

We did have a bit of comic relief before we left…my Dad’s jeans split right down his tush!! Yes, his jeans were ripped, and his underwear was hanging out for the world to see. Luckily, one of the staffers told my father, and he was able to take his jacket and tie it around his waist for the day. For the sake of my father’s modesty, I will not share the color of his underwear (hey, Dad, note the spelling). We were hysterical!!

We arrived at Hopkins and Mom was taken to the ER. My father and I took turns in the waiting room for a while watching Maya while the other one sat with Mom. They immediately took a CT scan, ordered a platelet transfusion, and decided to admit her. The nurse took some pity on us…and got permission for us to bring Maya back into the room with Mom. While there, she dictated an email, I read her the blog and your messages, and we had a few chats. We talked about what a great visit she had yesterday with Roz and Sharon, and we laughed over Roz’ message to Mom. It was funny to listen to them talk about the huckleberries…and boy, do I miss my Grammy’s huckleberry pie! I also loved hearing all of the stories of when they lived together.

My mom and I kept reminiscing today. I have to say, I wish I had been taking notes, because we remembered a bunch of funny stories, and I remember laughing and smiling a lot while we were waiting. Perhaps my mom will be able to remind me tomorrow when I read this to her, but I think I’m just so tired that I remember the feeling, not the details. My mom also asked my Dad to bring a few of the Dr. Seuss books to the house so that she can record them for the children (thanks, Trenna, for the great idea). As we were talking about the books, my Mom turned to me and told me that we needed to write our own Dr. Seuss book about Dad. She thought that we should use the book Green Eggs and Ham for our book, and suggested it include lines like “Dad can sleep in a house, Dad can sleep with a mouse. Dad can sleep in a boat and Dad can sleep without a coat. Dad can sleep here or there, Dad can sleep most anywhere!” We then started to substitute other words…like shop…and thought the book idea just got better and better!

Before the CT scan, they warned us that CT scans are challenging to read post-surgery and radiation. Often, they look far worse because of the swelling from radiation, and they did not want us to be upset if they told us things looked worse. Luckily, we got good news about her CT scan right away…no major brain bleeds! That was a big relief – they were concerned that was the source of Mom’s problem. Even better news…Mom’s “midline shift” (the portion of her right brain that is pushed into the left side of her head due to swelling) had reduced by .6 cm – fairly significant! That is really good news because they usually expect things to be worse at this point, not better.

We were there for maybe 2 hours before they transferred her to a room. She is actually now in the Weinberg building, and will remain there for a few days. Because we have run out of insurance days for rehab, Mom will not be readmitted to a rehab after this hospital visit. We asked the hospital to make sure that they can keep Mom until Friday (since we have no way to take her home prior to Friday), and they said it would not be a problem. We asked if they expected her stay to be longer than a few days, and right now they are still anticipating that she will come home on Friday. We will need to work with everyone to get her equipment ordered…we are not sure if they ordered everything at Levindale or not, so we will need to figure that out in the morning.

Donna – if you read this, Mom was asking about you all day today. We were unable to come up to your floor to see if you were working and let you know we were at Hopkins, but she is hoping that if you are in the hospital tomorrow, you’ll find time to stop by and visit. Actually, she said she would love to see anyone from Halsted (and asked me if I should call Ed to tell him the elephant was back in town and he might be able to get his job back again).

Mom was in good spirits today. She really is fine, minus the occasional bouts of dizziness. There is a 1 nurse to 2 patient ratio on her floor, so we decided not to get an aide. She is in a large private room, and the nurses seemed fantastic. They were not concerned about handling any of her bathroom issues or the transfers, and they were very much on top of her medications. Mom says she feels safe there, so we were relieved.

Once we got to her room (around 5), I spent time with her nurse giving her information about Mom. She was quite kind, as was the doctor. Jeremy arrived around 6, and we stayed with Mom for a while longer. Dad left around 7 to drive back to Levindale to pack up her room, and Jeremy and I stayed to sort out a few things at the hospital.

Mom was actually fixated about something she kept seeing outside her window – she was very insistent that she could see a bank sign with the temperature on it, and wanted to know if anyone else could see it. We all took turns, but we kept telling Mom that she was looking at some stoplights, not a bank sign. She was quite funny, though – at one point, I was trying to figure out what she was seeing, and I said “Mom, I’m looking, but I just don’t see it.” “Did you look to the left?” she asked. “I’m looking left…oh, you are snarky, aren’t you? Very funny, Mom.” Yes, it dawned on me that Mom was teasing me because we always ask her if she is looking left when she is having trouble seeing something. When I turned to look at her, she had a big grin on her face and her eyes were dancing at me.

It was 7:45 when we left to come home. It was a very long day, but I think my mom is in great hands again. I hope that things stay on track and we are able to move on Thursday and bring her home on Friday. I made a bunch of phone calls tonight to give everyone updates. Mom called a few times to tell me that she is doing well and that they already took her for her MRI. It is now 12:15, both children are asleep, and I think things are okay with Mom for right now. I hope we have an uneventful evening.

Date Night

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More craziness here! I’m going to try to keep it short, mostly because it is 6:00 am and the baby has been up on and off all night, and I have no idea how long I have before she wakes again.

The kids woke up at their usual time. While Megan took Micah to his Kidville class, I went with Elliot and Maya to meet my father at the rental house. We needed to take some measurements and make note of some things around the house to plan for the move. While we were there, Mom called us to say that she had thrown up again. Naturally, I was concerned, and I told Mom I’d call the medical oncologist at Hopkins.

We got the necessary measurements…but I noticed a small problem. Spiders. LOTS of spiders. EVERYWHERE. I’m very allergic to spider bites (as is Micah), so the spider problem definitely did not sit well with me. Luckily, one of my parents’ neighbors is a pest control specialist…I grew up with his younger sister, and we’ve known them for many years. I called Trey, and he’ll be by to take care of those spiders in time for our move.

After our home inspection, I dropped Elliot off and headed up to Levindale. When I arrived, Roz and Jay and Sharon were already there, visiting my mother. She was looking great – definitely in good spirits, and no signs of any nausea. We sat and talked with our company for a bit, and then my father arrived. A little while later, everyone had to leave us, so we returned Mom to her room for lunch. Once again, Mom wasn’t feeling very well. I sent an email to Dr. Holdhoff, and luckily he called me back a few minutes later. He was concerned about the nausea, but said it was not presenting as a neurological issue. He did say he wanted to get another MRI if it continued.

Later that afternoon, Mom informed me that she was dizzy when she leaned her head back, and that was causing the nausea. I sent a follow-up note to Dr. Holdhoff, and we told the doctor at the nursing home. He informed us that Mom has a UTI, but he was concerned about the dizziness. I think he is requesting a scan for her in the morning…but I’m concerned that he isn’t going to understand what he is looking at with her brain cancer. He said he wanted to know if there is a “midline shift” – uh, yeah, that is definitely what he’ll find, since she has had a “midline shift” since the initially diagnosis and admittance to Suburban Hospital back in August. In fact, it had gotten much worse, and we were told we were unlikely to see signs of improvement for a few months because of the radiation swelling. I also think that a regular CT scan is pointless – he would need to order a CT scan with contrast to see anything useful at this point because of the cancer/surgery/radiation. I sent another note to Dr. Holdhoff asking if he wants to recommend a particular type of scan that could be done at Sinai instead of Hopkins, but we’ll see.

The rest of the afternoon was uneventful. We stayed with Mom and she was feeling fine. At 2:00 she went downstairs to finish her therapy. I did our daily facial cleaning and lotioning routine, and Mom told me that she thinks everyone tells her she looks so good because her skin is in good shape now. It made me smile, knowing that she thinks our ritual is helping her.

I left around 4:30 with Dad. On our way out, we ran into Diane and Joey and their friend Arlene, who were on their way in to visit Mom. I was glad that Mom would be having more company today. I made it home around 5:30 to spend time with Micah. Elliot and I had a surprise for tonight…we were going out to dinner and a massage! My friends Heather and Brad decided to come over and babysit the kids to give us some time out. Unfortunately, Elliot never made the appointments for the massages, so massage and dinner became just dinner.

We went to a new place in Bethesda called Vapiano. It was very good, and kind of interesting. It was Italian food (pasta, salads, paninis, pizza), but it was based on the German market concept. There are tables all over, and there are food stations. You have to order food from each of the stations, and they stamp your card for every thing you order. When you are all finished eating, you just pay the bill.

The food was delicious…but we had a terrible time. The phones were ringing off the hook – I was talking to the mover and to Trey (pest control) and to the organizer, Leslie. I realized that Elliot had not made a number of the arrangements for the house that I had asked him to take care of, so Elliot and I were fighting tonight. We are both so overwhelmed by everything we have to do in the next few days and just cannot seem to figure out where to begin. The house is a mess, I’m only home a few hours a day, and we are both pretty stressed about making the move happen. We are hoping that between the organizer and the mover coming the next few days, they can just figure it out and make it happen. If not…I guess all we really need moved is the furniture, our clothing, the kids toys, and the other big things. We can always finish moving the smaller stuff later.

Our first night out in over 4 months, and all we could do was fight. We are both under a lot of stress from everything going on, but I get so frustrated that he delays making appointments for important things, and then he seems surprised that they do not hold time in their schedules for him. I was so angry about everything…the move, the fighting, the canceled massages…that I left the restaurant early and went home. It was 8:45, and I could just tell that the kids were a mess and needed me to get back. I arrived home at 9:00, and walked into the house to find Maya screaming her head off and Micah wide awake and watching tv (I had told Heather and Brad to just turn on the tv if he fought them about bedtime and we’d take care of it when we got home).

Apparently, Micah was GREAT when we left – no crying or anything. After playing for a bit, he went up to bed, he brushed his teeth and took his medicine, he got into his pajamas…but he wouldn’t let them read him a book or put him in the crib. He started to call for his Daddy instead. When the crying started, they brought him back downstairs for a little Word World.

Maya, however, melted down shortly after we left. Poor Maya just did not want to stop crying. She was tired, cranky, and all she wanted was me. Well, to be more precise, all she wanted was to nurse. She was not interested in the bottle or anyone else for that matter. When I walked through the door, I realized that Micah was just fine, so I quickly swaddled Maya up tight and nursed her to sleep. Micah sat next to me and cuddled close while I put Maya to sleep. She was so worked up that she did that temper-tantrum snivel/hiccup in her sleep!

Elliot arrived home a little while later and put Micah to sleep. Mom called in the middle of all of this to say she was awake, feeling fine, and just waiting for her pills. She said she was nervous that she might throw up again. I told her to call if there were any issues, and I haven’t heard from her all night.

Heather and Brad left to get home to their dog. Heather and Brad were so kind to come and babysit…but sometimes I feel like taking time off is worse than just doing it myself. I spent the time away stressed about everything going on and wondering how much the children were melting down. I came home to a very upset baby and a wide-awake toddler, and trying to get them to sleep was harder. We are definitely going to need to work on having other people put Maya to bed so that nights out are easier.

At four months with Micah, he was regularly taking bottles and his Grammy put him to sleep at least 1 night every week. Because of Maya’s resistance to the bottle and everything else going on, I’ve been putting her to sleep myself every night, so she really doesn’t do well with anyone else yet.

Maya was very uncooperative even after Heather and Brad left – she stayed awake until after 11:00 pm (mostly smiling at me and laughing at the fact that she wouldn’t fall asleep). Elliot and I tried to talk through things…but we were both upset and kept waking Maya, so we tabled our discussion. I finally got Maya to fall asleep, and then I crashed. Elliot took Maya upstairs around 1:00 or so and he crashed.

Unfortunately, Maya woke up again at 5:00, and it took me another hour to get her back to sleep. Rough night here. I really hope that she stays asleep for a few more hours. I’m going to try and get some sleep – we have another long day ahead.

Three more days until Mom comes home.