Good news, bad news

Cate went to the doctor today. It was good news and bad news. Good news first - she gained a pound!!! I couldn't believe it. I mean, she only gained 3 ounces over the last 3 months, and then she gains a pound in 3 weeks. Hooray!!! Bad news - she has her third ear infection in 3 months. It looks like she may be on her way to getting tubes. I hope not; I hope she won't have any more infections. But, if she has to get them, she has to. I just hate the thought of my baby being put under anesthesia. Pray that her ear will heal and that she won't get any more ear infections.
Will is doing great! Ever since his surgery, he has hardly spit up at all. He hasn't spit up in probably 2 or 3 weeks now. The only time he spit up after the surgery is when he still had some swelling and tried to eat something too big. He's pretty much back to his old self, which I love. He is really trying to learn some words. His most recent advance in his speech is the word "ouce." In our language, this means ice cream. The reason he says "ouce" is because I call it ouce cream (like Michelle Tanner on Full House!). I ask him, "do you want pudding or ouce cream?" and he says, "ouce!" He is running, and jumping, and in constant motion. Continue to lift him up as well.
As always, more updates to come.

When it rains, it pours!

So, Cate had her 9 month well child check last week, and she only gained 3 ounces in 3 months. That's not good. She fell to just below the 5th percentile on the growth chart. Again, not good. Her head fell from 75% to 25%. And, to top it all off, her pediatrician thinks she is delayed in her motor skills and recommended that she start physical therapy. Jeremiah and I thought she was doing well - she is light years ahead of where Will was at this age. Apparently that's not good enough. Now we're trying to find a physical therapist for her. The state's early intervention services suck. They were totally worthless with Will, and if we hadn't gotten him private therapies, I'm convinced he'd still be sitting like a lump on the floor with no communication skills at all. Anyway, the point is, I was expecting a great report and got the opposite. Please pray that Cate will grow and be healthy. Pray that whatever is causing her not to properly process the tons of food she eats each day will go away. Work is also totally stressing me out right now. I'm really trying to do my best, but a coworker keeps making mistakes that I get blamed for. Pray that this situation will be resolved with my bosses knowing that I'm doing my job. Pray for patience, because I really really need it right now. I also need strength and encouragement to deal with all of this. So, I guess pray for that too. Cate goes back for a weight check in about 5 weeks. Hopefully she will have gained good weight. More updates to come.

I feel like we live in the doctor's office!

So, the kids have more doctors' appointments this week. Will goes to the surgeon on Tuesday for a post-op visit and to hopefully get his feeding tube replaced with a mickey button. Then, Cate goes on Thursday to the pediatrician for a hospital follow-up and her 9 month check-up. Finally, Will goes to the geneticist on Friday afternoon. The neurologist he saw in Little Rock said we should definately see a geneticist with the combination of his delays and seizures. Anyway, I'll try to post again soon when I have more news. Pray for us this week...that we make it to all the appointments and that we get good news!

Another Hospital Visit

The day after Will got home from Saint Francis from his surgery, Cate was admitted to OSU-MC. She had been running a fever the day before, so I checked her ears. They were infected, so I had a friend call in an antibiotic. The next day (the day she was admitted), her fever got up to 104.3. She wasn't eating and got dehydrated. She was also much less active than normal...floppy like a rag doll. Her pediatrician's office was closed, so I took her to the clinic where I work. Everyone there who saw Cate was like, "Oh my gosh, she looks really sick." One of my attendings looked at her, and said she needed to be put in the hospital. They were able to get an IV in her arm, but it infiltrated, so she wound up (after a total of 20 pokes) with one in her head. She got 3 days of IV fluids and antibiotics. She is doing great now, but she sure gave me a scare. She was discharged home in time to spend a little time with her Gran outside of the hospital and to have the best first Christmas a girl could hope for.

We Survived Surgery!

Will had his fundoplication, gastrostomy tube placement, and orchiopexy on Monday. In layman's terms, he had the top of his stomach wrapped around the bottom of his esophagus, a feeding tube placed, and his right testicle tacked down into his scrotum. We were in the hospital for 3 days and got home late this afternoon. Will was so brave and so good. I was just amazed at how well he did. Unless we were moving him (or a nurse or doctor came into the room), he didn't even really cry. I really think that all of the prayers going up for him from all over the world are what are helping him get through this. I am so grateful that God put his strength and peace into Will's little heart and that he guided the doctor's hands in his surgery. Please continue to pray for Will in his recovery and for the rest of us as we deal with all of this. Especially remember Jeremiah because this whole feeding tube thing is freaking him out! I have one week before I have to go back to work, so hopefully Will will be basically back to normal by then. Anyway, more updates to come. Please keep thinking about us and praying for us.

Good news...I think

We got Cate's tests results back, and they were okay! Hooray! The problem is, we already were pretty sure she didn't have one of the major mutations that causes CF because she hasn't had any respiratory problems so far. This test was only for the major mutations. There are about 1300 minor mutations that cause CF, and there is not a test that tests for all of them. So, basically, we're in for more testing. This time we have to wait about 2 months to get an appointment with the specialist so he can answer our questions, make a plan, order the tests, etc. So, we wait.
Will saw the developmental pediatrician today. He was very pleased with Will's progress and is now calling Will's disorder Pervasive Developmental Delay (PDD). This is a well-known and established diagnosis and more importantly is paid for by insurance companies! I still think he has Angelman Syndrome. We're going to Arkansas Children's Hospital in Little Rock next month for him to see a neurologist I worked with as a medical student who has a lot more experience with Angelman than the neurologist here in Tulsa. Will is also most likely going to have surgery next month to help with his reflux and his retractile testicles (sorry if that's too graphic). He will stay in the hospital for 3 or 4 days if all goes well.
Please keep us in your thoughts and prayers as we prepare for this.

Sorry!

Sorry for the delay in posting. I was on vacation last week and had a wonderful time in Alabama with my family. No news on Cate yet. I called today, but no one called me back. We're going on 5 weeks since the blood was drawn, and I'm starting to get a little angry! Will may have to have surgery to help with his reflux. We'll no more in a few weeks. Hopefully I'll have some good news to post soon. Until then...