Wednesday, October 28, 2009

Puppy's Reaction

Puppy had a 1/2 day at school during the field trip. So he went home with his best bud E. E's mom called me and said that Puppy told her he couldn't have milk - that he was allergic to it. I told her we don't give him milk - but things with milk in it are fine.

30 minutes later I got a call saying Puppy is insisting that he can have chocolate milk. I was at work - I explained to her that he didn't understand chocolate soy milk vs. regular soy milk - though he did understand milk vs. soy. But it has been so long that he has been having dairy...not to worry. Go ahead - let him have it.

Hours later Puppy's face was swollen, hot, almost like it was on fire - his ears too. I took his temprature to make sure he didn't have a fever. He didn't - his body was cool.

Boy did I feel aweful. He has an appointment with the allergest, for the first time on November 9th.

2nd Grade Field Trip to The White House!

I got to join Belle on her 2nd grade field trip to the White House. We were all excited - the history, the amazingness...just increadible. The kids were disapointed they didn't get to see more, but I thought it was awesome...

BUT - one of the most memerable parts was the East Room. One of the children asked if the chairs were gold - the secret service agent who was in the room answering questions - responded - "no, they are plastic - here feel!" LOL I was amazed that this stately room had plastic gold chairs! Amazing:)

Sunday, October 25, 2009

Dose one

Bean got her first Dose of Methotrexate last night. We noticed NO side effects today. She had a friend come over and play, which was a great distraction...but really, I don't think she noticed anything bothering her. I am hopeful that it stays this way - though I have no expectations. The medicine builds on itself.

First dose - went off without a far.

Monday, October 19, 2009


It is time for me to educate myself about Systemic Juvenile Idopathic Arthritis...What do I know, what can I handle, how much I don't know or where to look. Right now - all I would like to do is be sad, I'm not ready to mobilize yet. I see/read of all these families the mobilize around their sick child and pull it together and do the extraordinary...BUT I HAVE FOUR CHILDREN! It isn't fair...but as Scar said..."life's not fair"

Sunday, October 18, 2009

New Adventure

Bean has been sick...should I go back to December 2008. A co-worker mentioned that my kids don't get sick...that I never seem to take a sick day because of my about a kinahurra. First was Bean on December 30th - 102.5 fever and croup! By New Years Eve we had sick children...4 sick children!

So they time for Bean's birthday - she turned 5 on January 5th!

And MLK weekend was supposed to have her birthday party the morning of the 18th. We had spent a lovely Shabbat at the M&M R's and a lovely lunch at L&M R's - Sunday we got up to make a cake for the party. 30 minutes into it Bean started vomiting - she perched herself on the couch - and we had to postpone her party...we decided to wait two weeks, and re-schedule it for February 1st. Bob got the bug on the 19th - and was able to stay home at watch the inauguration on the 20th...Puppy got it on Tuesday the 20th - Bean was back to school that day...and on the 21st Belle got it!!

On the 22nd - Bean got 103.5 fever. She said everything hurts. We thought she got the flu! It was the first time in my children's lives that I missed getting them their flu shot. We took her to the ped - wasn't strep. In-laws were here - we tried to do the normal stuff - motrin made a trip to the Silver Diner and Air and Space museum doable.

January 28th we took Bean back to the ped - for more blood work. My best friend had her baby on the 31st and we planned to go to NJ for the bris. February 3rd we were back at ped for more bloodwork...she STILL had a fever!

On February 4th - Bob's birthday I took Bean with me to get candles for Bob's birthday at school - walking out of the store Bean fell to the ground, her legs fell out from underneath her...she couldn't walk.

That afternoon we got the call to have her admitted to Children's Hospital (during a terrible meeting at work - different story line). We chose to go to Silver Diner with the kids for Bob's birthday, Bean was doing ok - and it seemed unfair to Bob's to not celebrate after we went to have her admitted... Mom came down to help.

I spent the first night with Bean in the hospital. Early morning blood draw - beeping machine of the baby next to us. On February 5th Bean had a chest xray, and two separate parts of a bone scan. The bone scan without sedation...first kid in the hospital to do so!!

We were hoping it was "just pneumonia!"

I spent the second night with her at the hospital. I got no sleep that night, but she did. Grammy came to visit at the hospital, and I tried to get a shower...they were broken!!

J brought the kids down to see Bean before Shabbat. They got to spend some time together before mom took them home. I stayed for the optomatrist visit. And then went home to sleep while J stayed with her. We missed Baby B's bris...sad and overwhelming on many levels.

It was Saturday, February 7th and Bean walked for the first time in days!! I stayed with her that night.

Grammy came down to be with her on Sunday. And slept over. It was the first time in a while J and I got to be with the other kids together.

Monday the 8th Bean had an MRI....and Grammy had to go back to NY.

Tuesday, February 9th Infectious Disease says they are done with her - on to Reumatology!

Wednesday, February 10th J brought all the kids for dinner at the hosptal. Bean was feeling a bit better. It was nice to be together!!

By Ferbruary 11th we were giving been 5 doses of oral liquid meds a day. She was hurling thing and going crazy. Not the easiest of patients.

And then we had to cancel our trip to California for cousin R's bat mitzvah. I wrote that day: "overwhelmed by the irony missing last year's pres weekend flight for snow- and this year for fever (thought it is 65)...this weekend doesn't have good luck!"

That day Bean said she was done watching tv! Ever heard of such a thing?!?

Belle lost her first tooth....Bob was her tooth fairy! And I missed the kids Cubs Club performances.

On February 12th I took Bean for her last invasive test. The bone marrow test. We needed to rule out the worst. The kids all came straight from school and played with Bean in the playroom. And then the news was NOT Leukemia!! We were all going home. No diagnosis...but a plan.

February 26th we took Bean for a follow up at Children's with Dr. J. We were able to start tapering off her prednisone.

May 7th J took Bean back to Children's with Dr. J. He reported back: "Best...Dr.Appt...EVER!! I posted on Facebook:
It looks like we might be ARTHRITIS FREE!! She is off meds and we don't need to go back unless symptoms come back!! "Best Dr. Appt EVER is right!"

June 4th Bean complained of her knees "not working."

June 16th Bean "graduated" from pre-school. I posted on facebook: "got teary eyed at Bean's graduation...watching her move and shake while dancing...4 months ago I wasn't sure she would move like this again...thank god for miracles!"

August 4th Bean had 104 fever - I took her into Dr. C - he said we were looking for
"good news like a UTI or ear infection!"
Neither were true, no other symptoms - looked like a repeat fever with unknown origin. It left as fast as it came.

September 21st 1:30am - we returned from a trip to NY, Bean could not climb into her bed. She had a 102 fever, couldn't walk so well. She stayed home the next day with a swollen left knee, & fever. We took her in for blood work on the 22nd, we put her on Naproxen.

September 24th Bean returned to school. The school agreed to take her back even with her fever, knowing that she wasn't contagious. But not only did she have a fever, and a swollen knee - her fingers hurt and 6 of them were swollen. They didn't even look like they belonged on her hands.

October 5th Bean continued to have a fever of 100.2 she was down 4lbs, fingers & knees are hurting...sed rate is up to 80... we were STILL praying the naproxen to starts to work & we could avoid steroids.

October 6th Bean dressed herself and skipped out the door on her own, for the first time in 3 weeks. I posted on facebook:
"There may be a light towards the end of this tunnel...hope the next tunnel is FAR FAR AWAY!"

October 8th I took Bean back to Children's for more blood work and to be seen by the new rheumatologist, Dr. H.

October 9th Dr. H called to report back on the findings, give us a diagnosis and outline for me the next steps. I posted on facebook:
We got a diagnosis. Systemic juvenile idiopathic arthritis. We pray that Bean is one of the 1/3 of children who will outgrow this debilitating disease....and for the strength to make the best decisions as far as medicine to treat her condition...and for the strength to tolerate her behavior on steroids!!