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Looking through some recipes I bookmarked I saw this WW's one for Pomegranate Coolers. It looks fantastic, and I can't wait to try one. Yum-O, and only 1 point!
Here is the new update from our Carepage-
Today Molly had a follow up appt. with Dr. Skarli's office. He is the one who did her surgery. Everything is going great, they just talked to us about how she was doing, and answered my long list of questions. We also got to see all of Molly's MRI and CT Scan pictures from before and after the surgery.(they actually are giving us a copy of all the pictures on a disk!) This was crazy, seeing the tumor really hit home about the actuality of how bad things really were, and how lucky we are to have her here today. We are so blessed for every minute we get to have Molly in our lives, and are just unbelievably grateful that she made it this far and is doing fantastic. God has big plans for her.
Her next MRI is scheduled for July, and after that we will met with Dr. Skarli again to go over the results. Molly will need MRI's every three months for a few years. In a few weeks, she has an appt. with all of the therapists again, to check in on how things are going. But else we have a nice break from the medical world.
If you have any questions about anything with Molly. Her hospital stay, surgery, the actual tumor, JPA, etc. Feel free to ask, or post them in the comments and I will be happy to answer them.
Hoping everyone has a great holiday weekend. We are so grateful to have all of you in our lives, God Bless!
So, today was the day they were going to decide if she would need more therapy or not. Molly met with the physical therapist this morning for an hour. Molly did fantastic, and was having a lot of fun playing the "games" with the therapist. They decided she doesn't need any further therapy, YEAH! They were very surprised at how well she was doing and said she is right back on track for her age. We did get a few different things to work on at home to help build strength. We are hoping to start Molly doing gymnastics for the summer, which will really help with a lot of those different exercises.
Molly's next doctors appointment is next Thursday with her Neurosurgeon. We are getting anxious for this one, and ready to see what he has to say. We have also been noticing that Molly is getting very tired again the past couple days, and looking very worn down. Hopefully this is normal and part of the healing process, they said it takes 3 months, but we will be checking this out next Thursday.
Thanks for continuing to think of and pray for our Molly. We are SO grateful for each one of you.
Throughout the week, Molly got worse and worse fast. She started having trouble swallowing and walking, due to hydrocephalus from the tumor blocking the spinal fluid. She was hooked up to an IV and started on steroids and other different meds. to prepare for surgery. These made her sick, which was hard for her as she was throwing up all the time. We had lots of blood work, another CT Scan, dehydration, and a bunch or other tests as the week went on.
Friday morning, April 23 at 9am they started her surgery. The surgery went great! The Neurosurgeon said it was the best case scenario. They were able to remove all of it, and it wasn't fused, which is what we had hoped and prayed for. We were so relieved to know we made it over that hurdle.
That night was really hard. It was awful to watch the ventilator breath for her. She also was having spontaneous eye movement and sort of waking up and crying and coughing, but was really not awake. That night she was throwing up even though she shouldn't have had anything in her stomach, so they also ended up having to pump her stomach. She had to have another MRI that evening after the surgery. This is to make sure they got it all, the good new is, they did! We were thrilled. The tumor was a JPA, Juvenile Pilocytic Astrocytoma. And the pathology report came back to reveal in was not cancerous! We feel so lucky to have gotten such great news.
The next few days after surgery were hard. Molly wasn't talking or moving much. She had a blank stare and seemed very sad. After she started being awake more they started to worry she had a form of cerebellar syndrome or posterior fossa syndrome. After a few days, they stopped the steroids she was on completely. She was taking these to control the swelling of her brain, you are supposed to slowly tapper off steroids, but since she was getting so sick and acting depressed they decided that once the swelling should be under control to just stop them. This was the best thing we could have done. As soon as she was off the drugs, she started acting like herself again. She was talking and eating!
The Speech Therapist said she was "blown away." And that Molly was sounding and talking fantastic. She did the different assessment tests and stopped because she was so far ahead of where she should be at her age. She said Molly will need no further speech therapy, not even outpatient! This is such fantastic news, considering 4 days earlier she was barely saying 3 words!
The Occupational Therapist was also so impressed. Everything she had Molly do, she did great. She even had her doing some higher level things just to see where she was at, it was fun to watch Molly acting like she did before surgery, she has such a great attention span for these activities. The Occupational Therapist said that she doesn't need any outpatient OT either!
The Physical Therapist was the one we thought would need to work with her the most. But we couldn't believe her change in the 2 days we were there. She was still a bit tipsy and leaned to the right, but was getting so much better. The physical therapist said that he really thinks as she gets her strength back she will improve on her own. They said for everyday that she didn't move, it will take 3-7 days to get that strength back, so we should see huge improvements in the next month! For the next two weeks we have to kind of spot her when she walks and let her practice and then we will go back to Mary Free Bed for them to test her and decide if they want to do any outpatient therapy here!
We also met with the child psychologist, which I was extremely happy about. Molly started to shut down a bit and stop talking and participating when other people are around. She also now hates anytime a doctor of nurse comes in and freaks out if anyone needs to touch her arms or legs or take her vitals. I wanted to make sure how we should deal with this and what to do to help a two year old deal with this traumatic of an experience. She really helped and thinks that Molly will do fine and is handling it just like you would expect a 2 year old to.
Since we've been home things are going great. Molly loved being in her own "pink" room. And is talking and walking like she used too. She is actually even walking better than she ever has!
Last week Molly had lots of different doctors appointments. She saw the Pediatric Ophthalmologist since her eyes are still not working together all the time. She also had to have a CT Scan, and spinal tap to make sure that they didn't miss anything from the pathology. This went great, and showed no sign of cancer! Over the next few weeks, and years, she has lots of follow up to make sure that everything is good.
It's hard to explain how the last few weeks went for us. Sometimes we are struggling, sometimes we are strong, and sometimes we still didn't believe it was truly happening. We had some of the best moments of our lives, and some of the worst. But we made it though.
Molly truly is a miracle! We are in awe of God's love and feel so lucky everyday to have been given such amazing daughters. Thank you all for praying hard and keeping sweet Molly in your thoughts. We will never forget this time in our lives, and never forget how much faith, love and support we received from all of you.