Happy Halloween

Pictures

I finally have some pictures to share. Jordan and Winston are both doing so much better. Jordan's lip is looking better every day. Her scab by her eye is gone. We have been able to keep her nose clean with a few saline drops and a suction pump. She is very swollen from the medicines she is on. They say that will go away once she is off of them. Winston is not crying all day anymore, and that has been great. They are both sleeping better at night. I still don't get a lot of sleep but some is better than none.

Back From the Hospital

We had another trip to the hospital. Jordan got off of her steroids, and the hemangioma started to flare back up. Her nose now is one big hole. She lost the part between her two nostrils. The hemangioma was wrapped around the tip of her nose and that is one part that flared up. We took her to the ER at Dell Children's Hospital in Austin on Tuesday night. They went in and cleaned her nose. The doctors said the damage is done, but they don't think it will continue to get worse. We put her back on the steroid and things already look better again. I guess the two medicines that she is on have to work together.

It has been really hard watching your baby's lip and nose disappear. Winston stayed with my sister. It was also hard being away from him for so long. We are all home again. I would say things are getting better, but Jordan stayed up ALL night last night. Winston was very restless. My prayer is that Jordan heals quickly and that we are all able to rest at night.

The Latest...

Jordan passed her MRI and MRA. We are so relieved. The doctors say that her brain is just fine. The hemangioma is on her face. They did find it in her cheeks, behind her right eye and in her nose. We are giving her a fantastic medication with little side effects. Since we started the meds, we have seen great results. The hemangioma has stopped growing. She has a scab around her eye where it ruptured, but that has started to heal. Her lip is also starting to heal. We are still not sure if she will need plastic surgery on that. Because the growth was in her nose, I am having to clean that several times a day. She gets large blood clots in it. It is not very pleasant for any of us. I think they are getting smaller though. I am just so happy she will not remember any of this.

Winston has colic and cries a lot during the day. He has a very loud high-pitched scream. It is hard to ignore. I told him he is lucky he is so cute. They are both not sleeping well at night, and I am running on little to no sleep each day. This week I really broke down. Everyone keeps telling me things will get better. I haven't seen the light at the end of the tunnel but decided I better put one there. I am trying to stay focused on that. I will have to go back to work on Oct. 12. I am not sure how all of that will be, but I can only focus on today. I have not downloaded any pictures lately because they just won't let me. As soon as I do, I will post them.