Sunny Days with Debi

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!)

Sitting in the giraffe tent last summer.

Tuesday morning, Thom was awakened by much noise from our chicken coup.  He went to investigate and discovered that a raccoon had eaten two of our four chickens.  The raccoon was escaping over the fence with a third chicken when Thom ran to the rescue.   Thom said the raccoon dropped the chicken and continued to look at him from the fence as if to say, “Hey could you hand me that chicken and I’ll be on my way?”  Ben and I have the movie “Over the Hedge” checked out from the library so I explained that the raccoon was just like the raccoon in the movie, hungry and looking for food.  When Thom told me how the raccoon stopped as if asking for more chicken, I laughed thinking of how that is exactly like, RJ the raccoon in the movie (played by Bruce Willis).  Ben thought the whole thing was quite an adventure, imagining his favorite chicken (Chip aka Daphne) and his father battling the raccoon.  He and Thom worked on a super duper trap together to keep more chickens from becoming dinner.

Ellie with funny hat from Jenny.

A blood draw on Monday discovered that Ellie’s sodium is once again on the rise (it was 153, normal is 135-145).   Thursday’s blood draw revealed the same number and a higher BUN which measures how dehydrated the body is.  This may explain why Ellie has been more tired, less coherent and less stable the last few days.  Driving me a bit loco not knowing why Ellie is becoming dryer as we give her more water.

Probably the highlight of our week, having Ms. Mack and Ms. Zwart stop by on Monday bringing us dinner which made me feel as if I’d won the lotto.  What a treat to not even have to think about dinner just have it show up on our front stoop delivered by two smiling faces. Ellie decided to start a joy/happy club and invited her teachers to join.

Tuesday I took Ben to the pediatrician because he had a suspicious looking bull’s eye type rash where a tick had bit him.  That kept getting bigger by the day.  The pediatrician even had to measure it because she was so amazed at how big it was.  It turns out Ben had strep throat and by treating the strep we would also be treating possible lyme’s disease.  On Friday, we discovered that the initial blood test was positive for Lyme’s, the blood will go on to another lab for verification of this diagnosis. 

Ben when he felt as if he could eat foods that required chewing with our friend Bella.

Then Thursday,Ben and I went to the dentist because he had a hurty tooth.  Well they discovered 8 cavities, including one that was about to abscess.  Fortunately for us that can also be helped by the antibiotic we started this morning.  The dentist suggested we have all the cavities filled at the hospital as an outpatient surgery.  The great thing about that is that we will get it all down in one day AND our insurance will pay more for that type of treatment than a regular dental visit.  The downside is he isn’t scheduled until September 3rd.  The dentist told us that the antibiotic will help the tooth to be less painful, so hopefully, we won’t have to go through 2 months of soft food or chewing only on one side. 

The thing that amazed me, once again, is the widely varying reactions from Ben and Ellie towards medical interventions.  When Ellie has been hurt in the past by a nurse or doctor, she once asked me if they meant to hurt her.  It was as if she recognized that the nurse or doctor had not intended to hurt her.  And so often whenever the hurt is done, Ellie is ready to be friends, give out hugs, tit tat (talk + chit chat).  Ben however, after the strep swab test thingy, looked at the doctor accusingly, and said, “She HURT me!!”  Then after the plebotomist took his blood, Ben just started kicking.  Which in a way I could understand, because in his mind here were these people who had hurt him and he needed to do what he needed to do to keep himself safe.    And whereas Ellie is typically not interested in any prize she might be given for her trouble (unless they are giving out crayons), Ben is all over the prize, whatever it may be. 

They both look as if they are anticipating some medical intervention here...

I was way nervous about starting the antibiotic and whether or not we would be able to get Ben to take it easily.  With Ellie any oral meds were usually thrown up, with much crying.  Not fun.  So Thursday morning I slowly started squirting the antibiotic in Ben’s mouth.  At first he was reluctant, then he decided that the med (grape flavored) tasted so good, he was wondering when he would get to take it again.  Yeah!  Then Friday morning, Ben decided he did not in fact enjoy the medication.  So, then the “Hey you get to take this for 14 days!! Twice a day!!”  transformed into, “We only have to take it for 13 more days!” 

Totals this week thus far:

153 sodium level, holding steady

2 dead chickens, 2 live ones

8 cavities

1 crazy very pregnant mamma

Proof that yes indeedy at one point Ellie consumed FRUIT!

Recently, I was reading how Gloria Steinam was on a bus once and saw a huge turtle near the road.  Concerned over the turtle’s safety, with the help of some of the passengers, she carried the turtle to a safer spot.  Later someone informed her that the turtle was probably coming near the road to lay eggs and that it may have taken the turtle 6 months to climb that far.  The lesson she took from the experience was that to make sure the person/animal you are offering assistance to actually wants/needs your assistance. 

Recently I was in Trader Joe’s with Ben working through some “chip issues’.  He wanted to try some chips, I did not want to take another bag of chips home that I was almost certain he would not consume.  Anyway, an older gentleman kept coming over to talk with us.  Which was challenging enough because I was trying to hurry through the store and get off of my sore toe without being rude to him, because he really seemed like he needed some companionship.  When he saw Ben and I having our moment of working through, he started trying to “help” by telling Ben he was going to have to learn to follow orders before starting kindergarten.  And by applauding my efforts at saying “no”, which was not really what was happening anyway.  Ben and I were trying to come up with a solution that was agreeable to  both of us, which is the goal that I am always striving for in my family.  My vision if you will.  Anyway.  The thought went through my mind, “Please don’t help me right now!!”  just as Ben said out loud, “I hope we never see him again.”  

Ben experiments with drool at an earlier age.

Or Friday morning when Ben tried an experiment to see what would happen when he pushed the water button on the fridge without a cup underneath (water sprays all over the floor).  I asked Ben if he could please clean it up, because he loves being a helper, he was totally willing to jump in and wipe up the mess.  But then the home health nurse started saying something about what a mess, you really have to clean that up, etc.  I know she was trying to be helpful, but I could tell that this line of discussion was going to turn Ben OFF to helping out.  It reminded me of when a toddler says, “I want to do it myself” or my more adult version,  “Please don’t help me!!”   Maybe my real frustration in both situations was with myself in not feeling able or knowing how to just ask both adults to leave us be.   

Which brings me to the conundrum (one of Ellie’s favorite words) how do you know when to jump in and help and when to step back and allow others to work it through.  I mean because at times it is wonderful when someone jumps in and does something unexpected (for example, when Lainie dropped off bread from our favorite bread company or when she folded laundry as she watched the kids or when Nancy and Gene vacuumed the whole house rather than just the rugs downstairs).  And during our hospital stays, the people that were the most helpful were the ones who said, “I am making you dinner and bringing it over Tuesday”.  Or “I can take Ben on Thursday to the park.”  Or the nursing assistant who just jumped in and started helping me clean up after a big poop blow out was exceedingly more helpful than the nursing assistant who walked into the room and stood watching me rush around cleaning up until I specifically asked her to help.  So in those situations it was actually the people who were able to jump in with assistance that were the more helpful than people who would just say, “How can I help?”  which tended to leave us both feeling a bit overwhelmed. 

Baby Ben and Ellie the first time she underwent chemo.

A few months ago, my Zumba buddy described us as being “Haiti”, in that we had all of these people jumping in to give us assistance during Ellie’s hospital stays.  Maybe as a local Haiti, I need to be able to speak up and say when something is helpful and when it is not (be more like I imagine Betty White would be).   As a helper, maybe it’s only offering assistance when you feel inspired to do so.  Or perhaps it is about really paying attention and noticing when assistance would be the most useful.  I don’t really have an answer to the question, just something I have been pondering.  Like that 80s song, “Things that make you go hmmm…”

The first time Ellie learned how to walk...

Yesterday late afternoon we arrived home from the hospital.  Ellie has moments now where she is feeling better, more like her usual self.  Then she has moments when she says, “I wish I had my energy back.”  And times when she just feels like crying (that may be the steroids talking or it may be exhaustion or maybe a bit of both.)

We have her set up in bed working on crayons, we are on the final box of crayons shipped from Virginia, if you can believe it.  Ellie fell out of bed earlier today and I race/hobbled upstairs to retrieve her as she was stuck between the heater and the wall.  When she starts losing her stamina from being awake, is when she has the most difficulty with standing/sitting/talking/walking.  She also had a major accident in her room this afternoon, all the way across the floor.  I don’t know how she did actually, she may have won some kind of female long distance contest with her performance. 

she was a bit easier to pick up.

On Monday, we have PT/OT/nurse coming over to start our homecare regiment.  Fortunately, we had much much better visit with the nurse who came last time.  She stopped by today just to check on Ellie, take her temp (94 degrees, on this balmy Friday) and blood pressure and check her hospital papers.  Also a different nurse will be coming on Monday, so we will have the opportunity to “shop around”.  

A couple more thank yous…A great big huge thanks to Nancy and Gene (aka Grandma and Grandpa) for ALL of their help over the last week–grocery shopping, vacuuming, laundering, doing hospital time, obtaining food, fixing stuff, wheelchairing me around, carrying items up and down the stairs, reading, etc. etc.  For being oh so willing to help in any way that we asked, without even rolling their eyes or giving us any attitude.  They drove a total of over 12 hours to assist us, even though Nancy is having shoulder surgery on Friday (hey that’s today I just realized!)  AND a yummy thanks to Aunt Suzanne who sent the best darn packaged cookies I have ever ever tasted in my life (and the baby completely agrees with my assessment!)  And an entertaining thanks to Karly and Valentine for taking Ben and I to the movie and lunch yesterday.   And an Ellie thanks for Brittany’s help with hospital bathing and for Cynthia’s attempt at Ellie time this morning (Ellie fell asleep instead.)

Ellie and I often discuss how although there are some things we must do, we always have the choice of what we think about.  We can choose thoughts that feel sad or bad or we can choose thoughts that feel good or sometimes just a little bit better. 

Yesterday afternoon, our neurologist, Dr. Hsu (pronounced shoe), stopped by to check on Ellie.   After listening to my monologue on what has been happening over the last few months, he said that after such an aggressive surgery, perhaps recovery would take longer.  And maybe recovery is an up and down process.  This statement totally made sense to me, as I recalled the times when I have had a cold or flu and felt suddenly better in the morning and worse in the evening.  It gave me a way to reframe all that is happening here.  Betsy C. said when she heard that almost the entire tumor had been removed, her immediate thought was how that would take a lot of adjustment for a brain, to go from lots of tumor to hardly any.   Those statements have helped to reframe everything going on right now. 

Speaking of choices, I was explaining to Betsy how when I was pregnant with Ben, I felt so indecisive, the pressure of making “the right” decision weighed heavily upon me.  It was when Ellie was undergoing chemo for the first time, something we had hoped to avoid.  Anyway, now Ben has the same difficulty.  He seems to constantly change his mind back and forth and back and forth.  When I told this story to Betsy, she wondered if maybe Ben had been like that all along and that I had picked up on that when he was in utero.  Again, another way to think about it.  And it certainly puts less blame on me, feels a bit better.

Then this morning, the rehabilitation person (I have no idea how she is different than PT/OT/speech therapy) came in and proclaimed that this, in fact, may be Ellie’s new baseline.  I almost had to cover my ears and sing a song to block out the mere thought of that as our lives.  This drooling, slurring, unable to sit up, hardly able to walk the new baseline.  Unacceptable.  And, of course, what I have been secretly fearing.  So what I am working on today is focusing on the idea of being on a journey of recovery right now, rather than trying to figure it all out or deciding this is the best we are going to get right now.

I want a drink of refreshing cool water.  I want a world without cancer. I want to take in this world filled with wonder and beauty.  I want to laugh through my tears.  I want to snuggle with my daughter without fear of hurting her.  I want to cry through my laughter.  I want to dance and sing and play.  I want to feel the freedom from that worry niggling me, whatever it may be, suddenly miraculously diminished.  I want the to sleep with the commitment of a baby.  I want to escape.  I want to dive in.  I want to live.  I want to allow.  I want a cupcake with sprinkles.  I want a rainy day.  I want a bright blue sunny day.  I want the wind blowing on my face as I drive with the windows down.  I want to talk about something other than medical.  I want to jump in puddles.  I want a date night.  I want a nice hot bubble bath.  I want to stay up late talking because sleep seems less essential than the conversation at hand.  I want to feel a part.  I want to travel.  I want to take my children to the beach on a gorgeous day and play in the sand.  I want to immerse myself in a thrifting spree where there is nothing but the bargain at hand.  I want a Green Tea Latte.  I want possibility.  I want there to be such greater options for cancer treatment that chemo, radiation, surgery are laughable.  I want hope.  I want inspiration.  I want to inspire.  I want a baby snuggled up lying on my chest, all newborn smell and feel.  I want a world without hunger.  I want the awe and wonder of Christmastime.  I want a mood changing song.  I want a tiny hand to hold from a body that bounces instead of walks.  I want the green of summertime and the white of winter.   I want to lose myself in a great movie, theatre, or book.  I want Ellie giggles.

Pretty much the same as yesterday.  Our criteria for going home:  sodium stabilized and Ellie able to at the very least sit up.  Now that Ellie’s sodium has gone into the normal range, it has continued to drop, so we are still working on discovering exactly what level of water she needs right now.  May have fewer blogs as there is not as much happening here and I start to feel quite boring telling ya’ll the same thing.

Ellie

One of Ellie’s jokes during her hospital stays has been “I am bedder”, pointing to her bed.  Which she discovered after discharge once, that the joke doesn’t really work unless you are in fact in bed.  Ellie is better able to communicate today than she has been for awhile.  She is still somewhat difficult to understand, but at least she can form the words now and responds as she typically would.  Her sodium has been back in the normal level.  We lowered her anti-seizure meds because the neurologist was saying how the medication can have a sedative effect.  And now Ellie has been awake almost the entire day.  She is still pretty weak, but was able to get up and take a brisk walk with the nurses to the end of the hall.  She was feeling very uncomfortable being upright again, and sort of sped walked up the hall and back in order to return to vertical sooner (hey I can relate). 

Yesterday Ellie’s 3rd grade teacher, Ms. Zwart, stopped by for a visit, which really perked Ellie right up.  Plus she brought us the best brownies I’ve tasted since Grandma Myers’s brownies.  Just the right soft/hard brownie texture that is so hard to achieve.  Ms. Zwart insisted that I have some medical professional look at my foot.  And today, finally, I was in enough pain to be motivated to go to the ER.  Ellie’s nurses took turns hanging out with her while I went down.  When I got to the ER, I was feeling so badly for leaving Ellie, and wondering if she would have companionship the whole time I was gone, that I started to tear up.  Right then, I heard the fast pitter patter of a Ben running up to say “Hi”.  When he saw me crying, he asked why.  I explained that everyone cried in the ER, and I just wanted to get my cry over with right off the bat.  Then when we went into the room, Ben wanted to sit on the bed and snuggle with me, because he is not allowed to do that on Ellie’s bed.  The nurse started asking my some standard questions, one of which was whether or not I had a will or a power of attorney.  To which I responded in a panic, “Do you think this tiny toe is gonna kill me???”  Apparently, these are standard questions they ask everyone, even someone with a 4th toe injury.  Everyone who came near the toe, I had the thought, “DON’T TOUCH IT WHATEVER YOU DO!!!”  I was not at all certain that I would be able to remain on speaking terms with anyone who hurt that toe.  I had an x-ray with a huge metal apron covering the baby.  My final diagnosis was, “Contusion of foot, bone bruise, osteochondrial lesions, occult trabecular microfracture.”  Sounds fancy, eh?  Basically they suggested I keep off the foot as much as possible, elevated and use ice to reduce the swelling.  But I did not have to have the toe “buddy wrapped” to the next toe.  Which would have involved touching the toe, which like I said, I am totally against right now.  They gave me a special shoe to keep the foot straight and unbending plus crutches to support myself. 

Oh boy I cannot get enough of these baby pics right now. Can u tell how pregnant I am? 10 weeks from today (give or take).

After we had a surprise visit from Ms. Zwart, Brittany came to visit.  So we had TWO mnft (marvelous nice fantastic and terrific) visits in one day.  Maybe that’s why Ellie is doing so much better today, after all the great visitors she has had, how could she not?  Our spectacular neighbor, Lindsey, watched Ben yesterday even though she’d spent the day watching her own 2-year-old, while Thom and I switched hospital shifts.  Today, Esther was somehow able to peel herself away from doting on her husband in honor of father’s day to come for a visit.  This was after just returning from a trip to Florida yesterday.  Pretty darn impressive.

One of the neurologists just stopped by and checked the EEG.  The officialreport is not in, but it looks like Ellie had no seizures during the 24 hour EEG.  There were some spikes, which means the brain was set up for a seizure, but she did not actually have one.  Dr. Iskandar questioned whether or not her anti-seizure meds were actually TOO high, making her sleepier and dizzier.  The neurologist is going to check on reducing her dosage slightly to see if that helps with wakefulness.  Feels like we are sort of at a standstill, without any new answers, and we are running out of ideas for possible solutions.