Pee cream

Yup my two year old asked for pee cream yesterday. She begged for pee cream. See Jillian has a thing where the opening where your pee comes out fuses together. We first found this when she was 11mo old and they tried to cath her in the hospital and it took multiple nurses at Children's multiple tries because the opening was almost completely closed. It has happened several times since. It starts where her diapers slowly are less wet and then she gets to the point where she is barely peeing. Yesterday was the first time however that she could explain to us the it hurt. We knew it did but yesterday she was crying that she had a boo boo. I asked her if she had to pee and she said yes. She then said pee hurt. I asked her if she wanted pee cream and she said yes and kept saying "pee cream" and signing please. It broke my heart. No two year old should have to ask for cream so they can pee. She hates having the cream put on but she laid nicely for it.
She was rather laid back last night. She played with uncle Jason before dinner and then hung out in her high chair and played while we ate dinner and played Ticket to Ride.
We had therapy yesterday afternoon too. She worked hard. Her therapist said that her muscles were weaker yesterday but she was definitely better then Sunday.  These times when her muscles get so much worse kinda stumps everyone. She did great in speech though.

Today she has been kinda crabby. She woke up fussy and wanted nothing to do with Brent this morning and I was only slightly better then he was. She peed a little overnight but not a normal amount.
She went to school and laid on the floor off and on. She would play for a bit and then lay down for a while. She just did not have the stamina. She finally had a better diaper this morning at school so I am hopeful that the cream is starting to help.
She fell asleep on the way home from school and slept next to me on the couch for a bit. Then she woke up screaming in pain. She just kept saying ouch. I tried to feel her tummy and she moved away from me (what I did feel of her tummy in 2 sec was hard). She would let me touch her arms and legs and head but her tummy was off limits, she even covered it with a blanket. Obviously her tummy her. She screamed for about 20min and then calmed down. She just got down from the couch and she has been awake for an hour.
About 10min after she stopped screaming I looked at her and her pants were wet. There was pee out the side of the diaper. It was not that she had peed so much that it overflowed but that her diapers are a little big around the legs right now because the top of her legs have thinned out.

So we wait for the Estrogen cream to do its job. It opens it up and makes it so it is easier to pee. I just feel bad for her though, however she really is handleing it all well and communicating with us whether it be with words or signs so that makes it easier.  All in the life of Jilli...

Sleeping with her babies last night

Sleeping on the couch this afternoon

This is how she insisted on standing when she was in pain. I took the pic to see if any of her dr might know why this position seamed to be most comfortable for her.