Watermelon balls

Therapy

When I took Madalyn to therapy yesterday Josephine thought it was her turn. She happily told ME bye and ran after Madalyn and Kristen....she was a little disappointed:(

Today was her turn and she happily went back and worked without me. The sessions are 30 minutes, and she is doing great!

Aspirin Decisions

I was wrong in my previous post. Dr Parker recommends aspirin treatment if the Hemotologist recommends it (which he did) because he is the specialist. However both said there is not enough data and research on childhood and inutero strokes so there is no clear protocol for the use of aspirin prevention . Both said it is ultimately up to me to weigh the risks and benefits and decide what I'm comfortable with. Which is where I am now...that is researching and trying to understand all the pieces of the puzzle to keep my precious girl safe and healthy.

Since we now know the results of the MRI, I called our Cardiologist with the new information and she explained that given that she had a left MCA infarct, her clot must have travelled through her PFO (which is now closed). However, because she had a clot, and because of the MCA stenosis, she also felt aspirin was warranted. I was comforted to hear that in her 15 years of treating children with heart problems, with the majority on daily aspirin, she has never had a case of Reyes Syndrome. She feels the benefit outweighs the risk.

I left a message for the Hemotologist to ask if he recommended the aspirin because of the stenosis or simply the history of a blood clot. Also at the appointment I did not tell him Josephine had a PFO so I want to see if that makes a difference. I also want to know if an MRA looking more closely at the arteries and veins could be helpful.

And my last plan before making this decision is to talk to Dr. Denney tomorrow. According to my google research there is a test that looks at the liver enzymes that can predict if a child may be predisposed to Reyes Syndrome. I want to ask him if we should test for that. I also want to ask about the chicken pox vaccination before starting aspirin to further minimize the chance of Reyes Syndrome. We are slowly redoing Josephine's immunizations because she did not show antibioties to certain diseases the China records showed she had received immunizations for...so I'm going to ask if we should do the chicken pox one now.

Growing up fast!

Happy birthday Josephine!

Josephine turned two today! And when asked how old she is, she replies "two"!

We will have a small family party tomorrow night. I cant wait to show her the Barney cake my mom found for her!

Appointment with blood disorder doctor today

Today my mom and me met with the pediatric hematologist to rule out blood disorders as the cause of Josephine's stroke. Our appointment was at 1:00 and by the time the medical student came in at 2:00, Josephine was already getting antsy in the small room.

The student asked many questions about her hemiplegia...he was very nice, it just took a long time and she was getting inpatient. Luckily my mom was there to help entertain her.

After another long wait the doctor came in. He also asked several questions about her hemiplegia. I asked some questions about the disorders they would rule out and he listed about 7 genetic and other clotting tests.

He also said he would recommend daily aspirin for future stroke prevention. However, because of the risk of Reyes syndrome, and other risks, I'll talk to our neurologist and pediatrician before starting aspirin. I believe our neurologist doesn't recommend aspirin prevention, but I need more information since I think we have conflicting opinions on this.

We went to a separate clinic to have 7 vials of blood drawn for the clotting and genetic tests. The lady that drew her blood was awesome! She was sweet to Josephine and me... and got it on the first prick!!

Josephine cried hard and even screamed "maaaamaaa" several heart breaking times as I held her during the blood draw. However, when we said "all done" she stopped crying immediately, happily repeated "all done", and began waving, smiling, and saying "bye!!bye!!bye!!. She is so sweet and her personality is adorable!

This picture was taken after her blood was drawn today. She is snuggling on top of me resting.

Water park

Playing in the water

Swimming

"w-a-g-e-r" aka water:)