Big brother Ben, proud poppa, Lotta.On Sunday, August 15th at 4:20 am, we welcomed Charlotte Joy (aka Lotta) into our family. Here are some photos for your enjoyment.Ben has a lotta love for the baby. Sometimes he calls her Angela, but he is still not completely convinced she is a girl.
Ben loves to help out by holding his sista.
Again Ellie looks so wise in so many of her newborn photos.
OK so baby Sunshine did not agree with me that 8-9-10 would in fact be the perfect birthdate. Every day now Ben gets super excited, “Maybe today will be the day OR maybe next week.”
My friend, Jen, (from Zumba not to be confused with Dr. Jen, Jenny, Jennifer or Jennifer) requested that I blog an update on Ellie. Ellie continues to do better and better. Her neurologist suggested we try Ritalin as a stimulant. If you do not have ADHD, then it acts as a stimulant. As you know, every time we start decreasing her steroids, Ellie becomes more sleepy and starts leaning when she sits/stands/walks. Last week this was beginning to happen once again. We started her on Ritalin and she was suddenly more awake and not leaning at all. Amazing. Her physical therapist said they had the best session ever–Ellie was stronger, not leaning, and even more cooperative and focused.
Yesterday we went to the hospital for a blood draw and to clean Ellie’s port. Ellie still has her port (an access point for blood draws and IVs) in from when she was doing chemotherapy. It is a surgical procedure to remove the port and we wanted Ellie to be stronger before putting her through yet another surgical procedure. So once a month, we have to get the port cleaned by our oncology nurse, Peter. Peter is so fabulous. He loves to laugh and thoroughly enjoys Ellie’s words and stories. As we were getting ready to depart, we ran into Dr. Puccetti (oncologist) and Kristin, her nurse practitioner AND Dr. Iskandar (neurosurgeon extraordinaire) and his nurse practitioner, Jane. Dr. Iskandar immediately asked how Ellie was doing on the Ritalin. I was amazed that just off the top of his head he would recall that was our most recent course of action. Then he asked Ellie what her little sister’s name was going to be, because he recalled that Ellie wants a sister AND that we STILL don’t have a boy’s name chosen. I mean the man is a freakin’ brain surgeon. How does he keep all of these extraneous details in his brain along with all the mechanics of the brain and brain surgery. I was totally touched that he recalled. I could not imagine the people we worked with in Chicago even being able to recall Ellie’s name, not to mention all of the details of her. When we returned home, I called Thom to tell him, once again what a fantabulous medical team we have here!!
Ben as a newborn.
About a year and a half ago, I suddenly, inexplicably, knew that there was another, as yet unseen, member of our family. For several months I struggled against this wanting. It felt like I already had my hands full. The funny thing was I believed this so hard that one day a neighborhood woman stopped to tell me I needed to stop having babies. Funny. There were numerous logical reasons NOT to have another child. Yet, I would look around our house, be on a walk, and suddenly envision this new baby with us. Unfortunately, there was an empty baby-spaced spot that could not be filled otherwise. Already a part of our family. He/she was a force not likely to be stopped.
In the book, Lift(Kelly Corrigan, 2010), the author/mother tells her daughters that “This was my dream. You were my dream (p 77).” That so perfectly describes how I feel about my family. All those years growing up, going from one family to the next as my mom remarried, I longed for the family that I have now. I recall seeing a magazine picture where a mother was in the bathtub with 3 or 4 kiddos and I longed to be that mother. I know there is a lot of talk about how children feel misplaced when another child joins the family. As if that particular child was not enough. It is compared to a husband taking another wife. I tell my children that the reason I want to have another baby is because I have had so much fun with them that I wanted to do it all over again. I was ready to jump back on that roller coaster ride for all its twists and turns. This baby, just like Ben, gave us something to look forward to in a year filled with surgeries, chemotherapy, hospital stays. I know that at some point, I will look back on this year in wonder and awe at how we all not only survived but thrived in the midst of all THAT. And I will know that somehow this year has helped to shape who we have become. Pushed us to evolve and adapt to that which we thought we could not.
Ellie right after birth, looking wise already.
Today I am full term (37 weeks). The baby could come any time, of course there is a 5 week time span of when this could occur. (I am shooting for 8-9-10 because I think that would be such a cool birthdate to have. Thom likes the idea of the 28th, because Ellie is on the 26th (of Jan) and Ben is the 27th (of March.) Now my dream of holding this baby, walking him/her around the neighborhood is even closer than ever. How fortunate this baby will be to have a dad like Thom, who will laugh, play, enjoy, listen. The baby will learn how to be relaxed and confident from him. And how to emit loud bodily noises. Ben is already planning on teaching this baby absolutely everything. He calls the baby “Sunshine” because that could be a boy or girl name (although I think T-Rex was his absolute first choice for a baby name.) The baby will learn so much about appreciation and unbridled enthusiasm from Ben. The baby will be taught Ellie’s creative words and her gentleness. And how to jed (joy spread) and love unconditionally from her. Although Ellie has not been a big fan of babies as of late, she will still, unexpectedly tell me how excited she is for our new baby to arrive. I do not know how I was so very fortunate to have my biggest dream come true, but I did.
Huggable kissable Ben
Ben started day camp last week at the YMCA (soon to be renamed “Y”, which will be hard for me not to think in my head in a dramatic voice, “WHY???”) The first day Ben was a bit nervous and excited. We talked about how it’s funny that you can feel BOTH nervous AND excited at the same time, particularly about something new. He did great with drop off on the first day. Then about 15 minutes before I was to pick him up, he started missing us and everything seemed sad sad sad. One of the teachers told me he was pretty much inconsolable for those last 15. When we left, Ben explained that he had not enjoyed the snack (gluten free graham crackers aka cardboard) and that he was hungry, tired, and hot. I actually appreciated that he came up with these reasons for his upset because he wasn’t blaming the day camp for being “bad”, which made it easier to go back to the next day.
The second day when I came to pick him up, Ben was looking for us out the window. On most sunny days (besides the first one) the children get to go to Jack Splash at the end of class. Jack Splash is an outdoor watery wonderland with lots of toys and water spraying in every direction.
By the third day at pick up, Ben was playing hard in Jack Splash not at all looking for me. As we were leaving, he started giving huge hugs to his classmates. It was as if every single day was a bit easier, a bit better than the last.
He has gotta lotta love.
Last Tuesday, Ms. Zwart and Ms. Mack came over while I took Ben to day camp and then went to the grocery store. I felt so weird being at the grocery store by myself. Now there are times that I feel like I really truly need to be alone wherever that may be–in the car, at the grocery store, on a walk. But when I walked into the BIG Hy-Vee, I felt like sobbing. And a voice in my head shouted, “There is NO crying in Hy-vee!” Ben and I share an enthusiasm for shopping currently. If I say, “Hey Ben should we try these crazy straws?” He’ll agree enthusiastically that yes we should. (Thom is hopeful that Ben and I not shopping together will translate into less of a grocery bill.) I suppose it just feels as if this really special time Ben & I have had over the last 2 years (while Ellie was in school) is coming to an end. Not that I won’t see him, he’s not afterall, getting his own apartment. Watching him change and grow and develop is such a different experience than watching Ellie and her constancy. Sometimes I wonder which one makes me more sad, the constant change of Ben or the constant sameness of Ellie. Very soon Ben will have this whole other life away from the rest of us. It’s weird suddenly not knowing all the intimate details of his day, but instead only what he chooses to share. Right now when I drop him off, he gives me lots of hugs and kisses and will inquire whether or not I think that will “fill him up” until my return. He has even shouted across the preschool room, “I LOVE YOU!!!” as I leave. I know that all that demonstrative, enthusiastic love will soon diminish. I am trying to just soak it in and enjoy it while it lasts. I feel this whole other world opening up to him, for which I am so excited about his involvement. At the same time, I miss our special days together, just the two of us. His sudden, fierce hugs and kisses. His unbridled enthusiasm. This letting go in parenting is such a constant, at times (like at the end of pregnancy) it breaks my heart. At other times it feels me with pride and wonder.
This fall, most likely, both my children will be riding the bus to school. Which will be terribly convenient for me with a newborn. Ben and Ellie will be attending different elementary schools (Ben’s is K-2nd grade, while Ellie’s is 3rd-5th). I just keep thinking of the last time Ben and I walked Ellie home from school. I didn’t realize that was going to be our last time walking home from school together. I keep wondering did I appreciate our time together enough? Was I grumpy that day? Did I holler and yell? It seems like the last time should be more memorable.
Update on Ellie: We have started lowering her dose of steroids, once again. Ellie’s face has become quite large due to the increased steroid usage. And once again, she has started becoming more sleepy and more leany or “tippigable” as she likes to say. (Although strangely this time her leaning is to the right instead of the left. Go figure.) Her physical therapist commented that while she is more tired and less straight, she has fortunately, not lost her strength. It does seem somewhat like a step back however in her recovery.
My fabulous brother Kip and his wonderful partner Patrick Kyle invited us to stay in a hotel with them in St. Louis during the holidays. At first we were reluctant, wondering if Ellie would be up for such an undertaking. Then one evening it just hit me that Ellie would never ever refuse a trip to see someone she loved regardless of how tired she felt upon arrival. We found a hotel in St. Louis meeting our requirements–a 2-room suite, indoor swimming pool, and restaurant on site. We decided to travel down the day before our time with the uncles so that we would be relaxed and ready for fun upon their arrival.
We drove to St. Louis and checked in on Tuesday. When we checked in on Tuesday, we were upgraded to a floor that gave us access to free breakfast in a lounge area that had snacks and sodas on hand at all times. We felt pretty spiffy. On Wednesday, Thom & Ben went to the Science Museum to see a special Dinosaur exhibit. Fortunately for us, Thom’s younger brother, Dan and his lovely family were in St. Louis for a convention, so we were able to meet up with them while in town. One of the things I recall most is how my nephew, Noah explained that when his mom got older he would hold her as she has held him since he was a baby. I mean it was one of the sweetest things, that he was already planning on sharing the love he has felt from his wonderful mother, Sara. Then, my niece, Noah’s younger sister, Mia, chimed in, wondering if he’d have to hold up their mother because she was dead. It was so unexpected after such a loving statement, I could not stop laughing about it for the rest of the day.
While at the hotel, Kip and Patrick were playing hide-n-seek with Ben in the hotel room. Kip would really stretch the game out, “I wonder if Ben is hiding behind this picture? Maybe he’s inside the fridge?” Well when Patrick started playing, he immediately found Ben, to which Ben responded by bursting into tears. Kip told Patrick quite huffily, “You aren’t supposed to FIND him!” At around the same time, Ellie was showing her uncles how to do the attitalk (attitude walk–hands on hips, never to be done on the stairs). Ellie got up to show them her attitalk and her bummy was totally hanging out of her pants and undies. Kip and Patrick could not stop laughing, to which Ben assumed was in response to something he had done. So then Ben started trying to retrace his previous actions to figure out what was so darn amusing.
After staying in St. Louis, we decided to go for broke and travel on to Memphis, another 5 hour drive. My children are just the perfect age for car trips right now. All we need is our personal DVD player for Ben and a box of DVDs and a box of crayons for Ellie to peel. I barely recall the children asking when we would be at our destination because it just so rarely happened. In Memphis, Ben really discovered his love of playing with his cousins. The 2nd morning he decided he would sit on the stairs awaiting the other children’s awakening. What he most loved to do was to just run around the house over and over and over. If the other children were not running around, he would say, “Hey let’s go chase!”
When we arrived in Memphis, I had my hair styled in two braids. A few minutes after our arrival, my niece, Bella, came back into the room sporting the same hair style. I felt honored that she trusted my hair judgement enough to want to simulate it. Bella is quite the fashionista, so it was high praise indeed.
At one point he gave his 2-year-old cousin a dinosaur, one he felt he had outgrown. To which his cousin exclaimed, “Wow! You got me a present??” To which Ben responded with, “Yeah, I didn’t really like that one.”
The weird thing was the more we traveled, the more our car became smaller and smaller. At one point a similarly sized car passed us with only one passenger on board. It looked so spacious in his car with a pillow in the passenger seat and clothes hanging in the back window. I thought, “Look at all that ROOM!!!” Before heading back to Madison, we stopped and spent the night at Nancy and Gene’s (aka Grandma and Grandpa, Thom’s parents).
As I suspected before this trip, I have never ever regretted making the trek. Even though Ellie was extremely fatigued. It was well worth it to create so many memories with this fabulous family whom we adore. Since then, Ben has often wondered when he would get to see his cousins again. Would he have to be an adult for that to happen? I know that we will find a way to be together again soon because it is just too much fun when we are all together.
(If anyone has any photos of this great adventure, would love to include them in this blog….)
So Sunday night was one of the low points in recovery as Ellie was so exhausted after being awake for much of the weekend she kept falling. I had the thought, “OK enough already!!!! I am ready for a change!!” I was so sick and tired of the falling down and worse the wailing that followed the falling and the subsequent bruises. Monday morning it was as if my wish were granted. Ellie went up and down the stairs twice by herself (with me trailing her of course). As in walking up and down the stairts not scooting. She was walking around tit tatting (talk + chit chat) with me like she used to do. I was feeling so confident that I gave her a bath by myself which I had not done since her last surgery for fear that she would get stuck in the tub and I would not be able to get her out. After we finished her bath, she turned to the back 
of the tub and sort of walked herself up into standing. Without my asssitance at all. I have been recalling the first time Ellie was in the hospital, a mom was complaining how her 7-year-old was back in diapers. She was frustrated, despairing. And I recall so clearly wondering how she could complain when I was just in the space of being greatful that Ellie was alive. But what perspective did I have to judge really because I had a 20-month-old. I feel like this extended recovery has given me the opportunity to be more compassionate towards that mom. I mean I have no idea what her story and her son’s story is so who I am to judge? Ellie really truly seeming to be on the road to recovery made me feel possibilities opening up. Like Ben being able to go to day camp at the Y to prepare him for kindergarten. Before I could not imagine how I would even get him there because I could not get Ellie to the car and back in the house safely. Now it feels like getting out to take Ben and pick him up would be great strengthening for Ellie too. And last week during her “decline” none of these seemed remotely possible. Amazing how much can change in a week!
A super duper thanks to Cynthia for her surprise Monday visit. Bringing dinner over last night. AND bringing bagels and dolls for Ellie this morning. WOW!!! That’s just about all we can say.
Ellie plays Marian the librarian.
So everything checked out at the hospital yesterday. It looks like her shunt is still functioning. (With all the scar tissue in there, Dr. Iskandar [neurosurgeon extraordinaire] said the shunts are still really important to her functioning). She was up all day yesterday only sleeping for about 5 hours last night. Contrast that with this week when she was sleeping 16-20 hours a day. She is still having a great deal of difficulty with balance/strength. When Ellie started wailing from a fall earlier today, I raced upstairs to assist. Because when Ellie falls, she falls completely totally down usually face forward and cannot extract herself from that position. I don’t think Thom and Ben have seen me move that fast in a looong time. This morning she also had lots of shaking of her arms, legs, hands. Not sure if it was a seizure or what. Fortunately, it has subsided now.
A few days ago, our neighbor, Chris saw me across the street and she shouted, “WOW, you are SO pregnant!!!” We tit tatted (talk + chit chatted) for a minute. Chris told me that she was reading an Eckhart Tolle book. His big message, from my understanding, is embracing and living in the NOW moment. Chris said as she read the book she thought of how Ellie already knows and is living everything in his book. And I had to agree wholeheartedly. Chris wondered at how easy it would be for Ellie to feel discouraged, depressed, angry, frustrated having so many surgeries, hospital stays, and challenges moving around now. Instead, when Chris comes to visit, Ellie spends the whole time talking about how jilled (joy + filled) she feels. How fortunate am I to have a daughter that spreads that message and a neighbor who notices?
As I mentioned yesterday, Ellie has been on a decline this week. We checked her sodium this morning and it was in the normal range. We had a quick brain MRI this afternoon. We are in the PICU right now and preparing to do another brain pressure study. Right now they are putting the device in to measure the pressure (Ellie is under anesthesia). Just wanted to let you all know, that’s pretty much all we know as of now. Once again lots of questions floating around no clear answers. Another opportunity to embrace uncertainty.
The highlight of my week. Yesterday it was super hot for Wisconsin. Up to 90 degrees and humid. Our bedroom has an air conditioner so we have been referring to it as the “cold room”, sort of like how some people have a “panic room”. Yesterday afternoon when I could not possibly stand the heat any longer, we retreated the cold room. We set Ellie up on the bed with some stickers (yes gasp! something other than crayons, she has been really into happy face stickers). Then Ben and I picked out some old school Dr. Seuss books and we had story time on the bed. I felt so great reading to ALL my children, finding an activity with which we could all participate. There was a moment of total contentment where I remembered to savor the moment knowing that very soon everything will, once again, change. How many people are fortunate enough to get to spend the day relaxing and bonding with their children? In that moment it felt as if there was nothing more important for me to be doing.
The face for taking a nasty tasting antibiotic.
Last Friday I went to pick up Ben’s new antibiotic. When I went to pick it up, the pharmacist mentioned that there was a 10% chance that Ben would also have an allergic reaction to this antibiotic (and if I were in a totally positive space, which I was not, I would think a 90% chance he will not have a reaction). I asked how I would possibly know since his body was already covered in a rash (which clears up on its own within 3-4 days and does not in anyway respond to hydrocortizone or benedryl). He just kind of shrugged and mumbled maybe I’d have to see if it got worse. Worse?!?! Since we were unclear if the rash was caused by the original antibiotic or the secondary viral infection, I asked the pediatirican what would happen if we just kept taking the original (good tasting) antibiotic. She explained that Ben would eventually develop burns on his skin and in his mouth that would need to be treated at a burn unit. Yikes! So by Saturday morning I was nervous about the possibility of Ben having an allergic reaction to the second antibiotic. After consulting with the pediatrician, we halted the antibiotic for the weekend, allowing Ben’s body to recover from the original antibiotic. On Monday morning we discovered that Ben did in fact have Lyme’s disease which meant that we needed to continue with the yucky tasting second antibiotic. Fortunately as of tonight, we have only 3 more doses to finish up!
A (rare) smiley face photo of Ellie.
Last night I was lying in bed devouring a book as I tried to discover a comfortable position for sleep. Suddenly I heard a loud thud. I raced (well as fast as I can race in my quite pronounced pregnant state) out of the room and found Ellie face down in her bedroom. She had fallen “on her head” as she told Thom and I. Ellie has taken somewhat of a downward turn this week. On Tuesday, she started seeming more tired and having more difficulty moving around, or even sitting up. The last few days she is back to sleeping 16-20 hours a day. I kept thinking that maybe it was just because it is so darn hot. Or maybe she was just having an off day. But then the physical therapist came by today and said Ellie was definately on a decline. This afternoon she fell again when she was trying to close a drawer. We go in for a blood test tomorrow to check sodium/BUN (a measure of dehydration). We are scheduled for a quick brain MRI on July 26, but may end up having one sooner than that.
A super big thanks to Cynthia for the yummilicous Pad Thai. I cannot stop thinking about how good it was.
I apologize for all the typos, I cannot seem to get my spell check to cooperate with me, we’ll just say it adds character just for today.
That is what I call healthy!
There is a children’s book by David Shannon entitled A Bad Case of Stripes where the main character suddenly and inexplicably awakens covered in stripes. Well this week on Thursday, Ben woke up with red dots on his legs. Not bumpy like a rash, just polka dotted. As if he’d taken a marker and drawn dots all over himself (which he added later on). As the day wore on, the dots began to spread to his arms, stomach and finally his face. Very strange indeed. He also started complaining of an earache, stuffy nose and finally on Friday morning he started coughing. Fortunately, the red dots were never itchy or uncomfortable, just quite interesting to look at. The pediatrician is pretty sure the dots, which eventually began to resemble more of a bumpy rash in appearance, is caused by an allergic reaction to the antibiotic he was taking that was going to cure all that ailed him (strep throat, Lyme’s Disease, tooth ache). The other symptoms are most likely caused by a secondary viral infection that he has picked up as his body is fighting off the other aforementioned ailments (which can also cause a rash like the one mentioned above). Shockingly, he even requested to lay down yesterday afternoon. On a bed. For more than 5 seconds. I cannot recall the last time that happened! I had the thought this morning that I guess he is just making up for being so healthy the last 5 years of his life.
Ellie smiles BIG for the camera.
Ellie continues to be pretty lethargic (although I must say that her lethargic looks drastically different than Ben’s lethargic) most of the time. She is still sleeping more and having difficulty walking around, or even sitting on certain days, on her own. We have physical therapy 3 times a week and occupational therapy 1 time a week coming to help her gain her strength back. We continue to search for some respite care for her so that Ben and I can get out of the house some during the day. We did get 2 more big boxes of crayons from Aunt Linda in Virginia which have been a life saver as many days that is about the only thing she wants (or can) do. Our crayon paper trail through the house continues to grow.
Our “respite care” this week has been visits from great friends. A humongous (a Sesame Street Word on the Street word) thanks to Esther for her visit and oh so delicious European chocolates on Tuesday. And a big thanks to Brittany for her visit also on Tuesday, so fun getting a chance to connect just the two of us. I almost felt like we should have a slumber party just to keep the fun conversation going and going. Finally, a bunch of gratitude thrown at Cynthia for her visit on Thursday, we had so much fun with her that she ended up staying half the day! It was another of my wishes that came true just to keep talking because it felt more important than anything else at that moment. (She even missed a conference call on our behalf!)