A new week

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.

And back home again...

[caption id="attachment_2769" align="alignright" width="300" caption="Ellie plays Marian the librarian."][/caption]

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?

Back in the hospital...

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 cold room

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. 

[caption id="attachment_2759" align="alignleft" width="300" caption="The face for taking a nasty tasting antibiotic."][/caption]

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! 

[caption id="attachment_2760" align="alignright" width="300" caption="A (rare) smiley face photo of Ellie."][/caption]

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.

Becoming polka dotted

[caption id="attachment_2752" align="alignleft" width="256" caption="That is what I call healthy!"][/caption]

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. 

[caption id="attachment_2755" align="alignright" width="300" caption="Ellie smiles BIG for the camera."][/caption]

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!)

The Holland Tunnel is NOT in fact a pedestrian zone...

[caption id="attachment_2019" align="alignleft" width="300" caption="Ghany, Susan, Bella"][/caption]

I wanted to acknowledge my one-of-a-kind brother-in-law Ghany (my sister's husband) who turns 40 today, July 3rd.

Last year in March, Ben & I traveled to New York City to celebrate my sister, Susan, turning 40.  My all time favorite moment with Ghany was when he stopped traffic so that we could cross the entry to the Holland Tunnel.  I mean literally, stood in front of 5-6 lanes of cars with his arm in the "stop" position.  Until some police officers arrived on the scene to tell us that was not in fact permissible.   Priceless and pure Ghany Zafer.  He just has that ability to do what he wants to do with unbridled enthusiasm and without hesitation.

[caption id="attachment_2026" align="alignright" width="300" caption="Ghany with his family on top of him..."][/caption]

There are times when I feel afraid to ask for what I want, as if even asking would be appalling.  Then as Ghany as my inspiration, I go for it.   We used to call it "pulling a Ghany".  He expects to get what he wants.

Ghany easily sees everyone around him as his friend or a potential friend.  He is unafraid to go table to table at a restaurant to make sure to include everyone in the party that he himself is creating at that moment.  When you are in Ghany's home you would be hard pressed not to feel welcome.  There are times when I have felt my hosting skills lacking and wished that Ghany were at my home to show me how its done.

[caption id="attachment_2748" align="alignleft" width="300" caption="The picture Susan thinks describes Ghany best...."][/caption]

When someone does give him a "no", as occasionally happens, he turns it into a great big "yes".  When his residency unexpectedly fell through in Kansas City, and he had a tremendous offer from Memphis, Susan & Ghany were reluctant to leave Kansas City, but they forged ahead.  The offer was just too good to pass up.  Now, years later, they have not only tolerated being in Memphis, they have thoroughly and completely made it their home.  I cannot imagine them living anywhere else.  Not only that, they make Memphis look so good that my Aunt Suzanne and Uncle Doug moved there and many other visitors have contemplated making Memphis their home too.  That is quite a statement.

When we were at a park in Brooklyn, a woman was sharing with Ghanyhow her son wanted to crawl in bed and snuggle with her and Ghany said, "Of course he does."  I could see the look of relief on this mom's face as she had just interacted with someone who really understood what she was saying and did not try to convince her that her actions or her son's were wrong.

[caption id="attachment_2747" align="alignleft" width="300" caption="Ghany offers himself as a delightful centerpiece for any wedding photo."][/caption]

Then when Ghany was in Central park renting bikes to ride with his daughter, Bella, he came across a Chinese wedding.  He asked if he could have his photo taken with the bride and groom, which they readily agreed to.  Again, he just jumps right into the fun, not seeing the wedding party as strangers, but instead as friends he is just now meeting.

When we lived in Chicagoland, we were having challenges with the hospital, particularly when getting MRIs.  We decided to get an MRI in Memphis instead.  The experience we had in Memphis was like we weren't even doing the same thing, it was so much easier.  Ghany really went all out.  He even tried to place the IV for Ellie but it was too hard to do it on someone so small that he loved so much.  Afterwards, Ghany took the day off of work so that we wouldn't have to wait at the hospital so long, so that he could keep an eye on her.  At one point, Ghany was sitting in the living room recovering from the morning and Ellie went up to him and asked him how hewas doing.  Ghany was simply amazed that even though Ellie was the one who had been sedated that morning, she was checking in on HIM, rather than the other way around.  It was such a sweet uncle/niece moment and I will never forget how Ghany was so touched by Ellie.  To this day, Ghany treats Ellie with a compassion and patience and just pure love that takes my breath away.  Not everyone "gets" Ellie, Ellie is fortunate enough to have an Uncle Ghany who does.

Happy 40th Birthday, Ghany!!

It all began with an early morning racoon chase...

[caption id="attachment_2736" align="alignright" width="300" caption="Sitting in the giraffe tent last summer."][/caption]

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.

[caption id="attachment_2739" align="alignleft" width="300" caption="Ellie with funny hat from Jenny."][/caption]

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. 

[caption id="attachment_2740" align="alignright" width="300" caption="Ben when he felt as if he could eat foods that required chewing with our friend Bella."][/caption]

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. 

[caption id="attachment_2742" align="alignleft" width="300" caption="They both look as if they are anticipating some medical intervention here..."][/caption]

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