Good News

Jiliang went to the Craniofacial doctors (Neurological surgeon and Plastic Surgeon) and the Cardiologist at U of M Mott's Children's Hospital this week. It looks as though her skull may have closed a little. It is possible that she may be able to have a bone graft in the future and possibly repair her skin. The skin is actually a big deal, because if she ever gets injured, we want the skin to be healthy and to heal. There are so many unknowns, and we were advised to wait another two years, to see what her body can do on its own. The skull closing on its own is a huge blessing. So I just ask for your continued prayers for healing. There are so many risks involved...I can't even begin to explain. There are also so many possibilities and positive outcomes, so I'm trying to have faith and believe that everything will work out. The good news is that she is allowed to be a child for another two years, and that she is alive and well. I think that the gift of time is a precious gift. We feel like we want to enjoy our family, and to allow her to enjoy life. In the future, we will deal with surgery when Jiliang is better able to deal with it and have some input on the decision-making. As the Craniofacial team said, she needs to be motivated and ready, because it could be a lot for a little girl who doesn't understand what is going on. The most important thing is that our daughter is alive and healthy. As for the Cardiology visit, we had a good visit, and Jiliang is doing well. We have been given the okay to see Dr. Cotts once a year, instead of every 6 months. That is really good. Jiliang will have to have a valve replacement in a few years. Unfortunately, the next valve replacement may not be able to be done in a cath lab. She could have another surgery in her future, which could be a 5-10 day hospital stay. Of course, it's hard to say what modern technology will bring forth. So I am really praying that technology allows for her to avoid another invasive surgery. Looking at the bigger picture, this is a little girl who wasn't expected to make it to her teens without surgery. We weren't even certain that the surgery could be successful, and here she is today, medicine-free, and healthy. We are really counting our blessings. Mostly, I am just thankful that my little girl continues to thrive, and I pray that whatever medical surgeries she needs to undergo can be done with success, continued health and the least amount of surgery or difficulty for our little girl. I also pray for the faith to get through the next hurdle. Please keep her in your prayers. Thanks and God Bless. Jill

How Do I get my Counter back?

Does anyone know how to get my counter back, that shows how many hits the blog has received to date? I had just under 35,000, but it has disappeared. Thanks.

Surgery Last Thursday

Here's a quick update for Friends and Family on the status of Jili's Tonsilectomy and Adenoidectomy. Jili went into to the new Mott's Children's Hospital for surgery last Thursday. Everything went really well. Jili was kept overnight, due to her cardiac condition. She came through the surgery just fine. By Thursday night, she was eating eggs and macaroni and cheese. The nurse was astounded. Right after surgery, she became a little nauseous. They gave her some medication, and then she was so fine, that she ate a lot of food. My kid is tough.
The new Mott's room was wonderful. We got the 12th floor penthouse with the best view in the hospital (so we were told by many), and the biggest (1 of 10 out of many, many rooms with an actual pull-out couch). The room had a flat screen with many movies and activities, and it had Jili's name on it. It also had surround sound.
We had a visit from some U of M athletes, and had pizza (Thursday nights are the best). The Child Life Department provided Jili with paints and several wood items to paint. She was pretty busy. All of our nurses were really wonderful and sweet.

Jili complained of no pain that evening, but during the night she sleep so fitful and loud, due to the swelling. She was coughing a lot, so I couldn't sleep at all. The night nurse laughed, because every time she would come into the room, I would sit up, even in the dark, and give a Jili update. The night nurse later said, "I was tiptoeing and trying to be quiet". I assured her that despite all efforts, I just couldn't sleep.
For the morning report (around 6:30 a.m.), a female doctor came in with two residents. I had only been asleep for about an hour and half, so I just layed there in the dark, looking up at her, half-asleep. She asked how Jili was doing and I said, "She's doing great." Then, I said, "No, wait, she tossed, turned and coughed until 4:30 a.m." Then, it dawned on me that I was talking in my sleep. After the doctor's report, I realized that I was being rude, and I acknowledged that I should be sitting up talking to her. She laughed, knowing that I was half-asleep, and told me to get some rest. I was finally able to update her about Jili's successes. It was all a blur. Before we came home, Jili did some art in the Child Life Department.
Once we arrived home on Friday, she was ready to ride her bike, and was not too happy about sitting still. She but still managed to overdo it a little on Friday, so on Saturday, we went to the library and played some games to keep her busy.
Sunday was our worst day. She was sick, so we actually missed Easter Sunday Church service. Fortunately, the on-call doctor called in an anti-nausea medication, which was a lifesaver. Today, she slept until after noon, and she was under the weather, but she made a comeback this evening. Tonight was the first night that she slept somewhat normal, which is very good, because I go back to work tomorrow.
All in all, she is recovering really well.
Thanks for all the thoughts, prayers and emails.
Jill :)

Autism Hockey Fundraiser a Huge Success

Wow, the hockey event was awesome. It was a great game, and the house was PACKED. Pittsfield raised a lot of money for Autism tonight. What a memorable night.

Guns & Hoses Hockey Event Tonight - Benefit for Autism

We are looking forward to the Pittsfield Police vs. Fire Hockey event tonight: "Put Autism on Ice". All proceeds benefit local families that have children with Autism. The kids are really excited about attending. My dad is the Emcee, so I am really looking forward to it. Unfortunately, Scott is not attending. He offered to work for one of the firefighters who is playing. We are hoping for a really good turnout.

Jili's Tonsilectomy

Jili is having her tonsils out on April 5th. It is normally an outpatient surgery, but because of her heart condition, she is staying overnight, and we get a private room in the new Mott's Hospital wing. Please keep her in your prayers.
Jill :)

Autism Fundraiser!!

One week from today Police and Fire will drop the puck drop at the Ann Arbor Ice Cube in the first ever battle of Guns-N-Hoses! Come join us for a night of fun as we raise money to help local families in the fight against autism!
The poster is attached. This is a family event. Please pass it on to everyone you know who might be interested.
Let me know if you have any questions.
Thanks. I hope to see you there! Go Red!
Jill :)