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...

She Gained Weight!

Cate went for her monthly weight check yesterday, and guess what! She gained 13 ounces!!! That is a huge improvement and the most weight she's gained since she was 2 months old. She now weighs 15 pounds 0 ounces. She is still at the 12% for weight, but she didn't fall on the growth chart this time. She's actually about the same spot she was on last month, which means she might have picked a growth curve. Hooray!
Will went to the eye doctor today. We are supposed to wait 3 months and watch his eyes. If the wondering gets worse, we're supposed to call and be seen sooner. If he doesn't get worse we'll see the doctor again in February. At that point, one of two things will happen. If his eyes are the same, he'll have to start wearing glasses. If his eyes are better, we may not have to do anything. That would sure be nice. I can't imagine trying to keep glasses on him. We'd have to duck tape them like they do his shoes at school!

No News Is Good News?

So, still no word on Cate's test yet. I wish that meant it was good news, but I'm afraid it only means the lab is slow! She was a little sick last night and had her first fever. I think it's just a cold. Jeremiah said he thinks there was a baby in the nursery at church yesterday with a fever.
Will is doing really great. His PT at school recommended that he start wearing orthodics again, so we're starting the process of getting those ordered. I'm sure he won't like them, but she thinks it will give him more stability when he walks. His reflux has started acting up again, which really stinks. He was doing really well for a few months. He also goes back to the eye doctor tomorrow for a follow-up on his "wandering eyes." I'll be sure to post as soon as I get any results back.

Santa

The kids went to have their pictures taken with Santa this weekend. I was concerned about how Will would do...if he would sit still, if he would smile. I was pretty sure Cate would do well. She did so great with her 6 month pictures last month, that I wasn't worried at all. Turns out Will did great and Cate wouldn't smile to save her life! Will just laughed and smiled. He gave Santa high fives. Cate was either looking at Santa (I don't think she's ever seen a beard before) or crying. I don't think she was afraid of Santa, I just think she wasn't happy. Anyway, here are a few pictures. We should get Cate's results back the end of the week. I'll be sure to post when we do.

More good news!

Will had a barium enema and an abdominal ultrasound last Friday. I got the results back yesterday. Both tests were normal! I'm so thrilled. I was fully expecting them to be okay, but it's always nice to know for sure. He is doing pretty well right now. He has a cold, but is other wise good. He won't keep his eye patch on, and if we don't keep it on him and see improvement, he may have to have surgery on his eye. Keep thinking good thoughts that he'll wear that dang patch!

Finally...Some good news!

I got a call from the kids' pediatrician today around lunch time. I'm very lucky in that he considers me a colleague as well as a parent and he calls me personally instead of having his office staff do so. Cate has had 2 tests this week for cystic fibrosis. One was on her stool and tested her pancreatic function. It isn't specific for CF, but it lets you know if the pancreas works. She also had a blood test yesterday that will tests for about 75 of the mutations that cause CF. That takes 2 weeks to get back. Anyway, he called to tell me that the stool test showed that Cate's pancreas works well. Hooray! This doesn't mean she doesn't have CF, but it does make it less likely. Kids with CF typically have pancreatic failure, and Cate's works super right now. I was so excited to get some good news. Now we just have to wait on the blood test. It's going to be a long two weeks. If she doesn't have CF (which I pray she doesn't!), then we'll start down the road of a failure to thrive work-up. This involves many more tests, but I think CF would be the worst case scenario, so I can deal with anything else! Keep praying.

More test results

Will had his EGD on Wednesday. He did great through the procedure. I was in the room when they started giving him the medicine to make him go to sleep. He got woozy, and the doctor laid his head back on the bed. Then Will started giggling like he was drunk. It was so funny! Anyway, once they were finally able to get Will to sleep (apparently that wasn't easy), he went through the scope fine and was awake right after when I got to come back in the room and see him. The doctor told us he has erosive esophagitis and gastritis from his reflux. Will is supposed to continue his Prevacid and the doctor gave us some more foods to avoid - chocolate (Will's allergic anyway), greasy foods (like hamburgers and french fries), tomatoes, and citrus foods/drinks. Yea! More things Will can't eat. Anyway, he has his barium enema and abdominal ultrasound on Friday. Cate has blood work tomorrow to try to find out if she has CF. Continue praying for our kids. M0re updates to come.

Updates

I know it's been a long time since I last blogged...sorry! I'm super busy right now between work and the kids and all their appointments. Anyway, the kids had their check-ups at the general pediatrician's yesterday. Will is doing great! His reflux is under pretty good control and he's growing like a weed. He's up to the 75% for height and weight. He's now wearing a patch over his left eye for 4 hours a day to train his right eye to see straight. He's doing pretty well with it. He doesn't mess with it until it starts to stop sticking. He goes non-stop all day unless he's asleep. He's learned a new sign ("all done") and is doing his best to say look. Currently it is "ook." Cate has failure to thrive. She's gone from 90% to 10% in weight over the last 4 months. She had a positive newborn screen for cystic fibrosis and her sweat test was equivocal. We'll be doing more testing to see if she has CF soon. She also had rectal prolapse at the doctor yesterday, and this is seen fairly frequently with CF kids. I'll have to keep everyone updated on her testing.

Possible Diagnosis

So, Will was diagnosed with DAMP syndrome about 9 months ago. It seems like a good diagnosis, but it's really like a catch-all for kids with a lot of different symptoms that can't find another diagnosis. I've always felt like Will could have Angelman Syndrome. We had the FISH test done for it, and it was negative. The report said this ruled it out 85% of the time. Tonight a geneticist came and spoke at the parents' meeting at The Little Light House. I asked him what the chances were that a child could have a negative test and still have Angelman. He said 80%! Can you believe that?! That's such a huge number. He said that there can be one tiny deletion on one gene that causes the syndrome. This can only be detected with new technology called chromosomal microarray analysis. Will recently had this test done (not knowing what I found out tonight), but we don't have the results yet. I am anxiously awaiting these test results, and I'll be sure to post as soon as we get them. Will has a busy two weeks of doctors' appointments and tests coming up too, so I'll be posting as we get results and find things out.

Breakthrough

We had a breakthrough today at occupational therapy. I usually don't get to take Will because I'm working, so today was a treat for me. Will did some things I'd never seen him do before. His therapist has been working with him putting these little pegs into holes. He usually just threw the peds or put them in his mouth. Today, he actually put them in the holes and then let go of them. He never lets go! That is one thing that we've really been working hard on. She also tries to get him to drop the checkers into the stacker in the game Connect Four. He usually won't let go of the checkers or puts them in his mouth. If he does try to put them into the stacker, he usually gets frustrated and screams or hits himself. Well, today he put them into the stacker and let go. His therapist, Rose, said she could really see some improvement in his skills and his attention span. Both of those are big praise reports. She also suggested using brushing and joint compression to help sensitize Will's nerves. She said this would help him be less sensory defensive. The hard part about it is that you're supposed to do this every 2 hours while he's awake. This means that we'd have to get the school to agree to do it while he's there. They are very sweet and accomodating to all the kids special needs, but this would really interrupt Will's day. We're going to talk to the teacher and see what she thinks. If any of you have experience with this, let me know how it's worked out for you.

Mini-Laps 2007

Today was The Little Light House's Mini-Laps 2007. It is their big fall fundraiser they put on each year. So far the school has raised about $139,000, and we have a corporate sponsor who will match up to $150,000. The theme was "Somewhere over the rainbow, dreams really do come true." The kids all dressed up as characters from the Wizard of Oz. Will went as the Cowardly Lion, and his stroller was decorated as an apple tree from the forest where Dorothy first met the lion. Each child made a lap around the yellow brick road. The kids even got to pick prizes in the order of the highest amount raised. Will raised about $2100...not too bad for our first year. Will was 15th highest out of 64 kids. He got this cool Little Tykes tricycle that goes from a rocking toy to a trike with a handle for the parents to push to an independent trike. It also came with a helmet. We all had a really good time. And, the best part is that Poppy flew in and suprised us by arriving at Mini-Laps in time to see Will make his lap.

Dentist Visit

Will had a dentist appointment today. He had never been before, so I wasn't sure how it would go. He was supposed to be sedated so they could clean his teeth, but I guess the dentist didn't think he needed his teeth cleaned because he didn't sedate him. Anyway, we got a good report. No cavities! Yea! We are to see him again in 6 months for another check-up, and this time I'm going to demand his teeth be cleaned.

Doctor's Visit

Today Will went to see Dr. Dahshan, a pediatric gastroenterologist. We'd been waiting for 3 and a half months for this appointment. You see, Will had really bad reflux and chronic constipation. The doctor was really concerned about the constipation. He also wants to make sure that Will is spitting up only because of reflux and not because of any other condition or disorder. In order to do this, Will is going to have to have an abdominal ultrasound, a barium enema, an EGD (upper endoscopy) with biopsy of his stomach, and an MRI of his brain to see if the cyst he has in his brain has grown or if there are more of them. He also had some blood work and urine analysis today. Many of the possible outcomes of these tests will require surgery of some sort. It's a lot to digest (no pun intended). Right now he has put Will on Miralax twice a day to get him pooping everyday and is continuing his Prevacid to help with his reflux. We go for the EGD on October 17th. He'll be put under conscious sedation for the procedure. He'll also be put under conscious sedation or possibly general anesthesia for the MRI. Pray that all of these tests and procedures go well.

Big News!!!

Today was a VERY big day for Will. He pooped in the potty at school! This is something that most parents of 3-year-old little boys take for granted, but not us. I know this was probably a happy accident, but I don't care! I honestly never thought this could happen. I had just imagined my life, changing my son's diapers when he was a teenager. Now, I realize that I might not have to. I know we're still a long way from being potty trained, but praise the Lord! I hope we'll have more milestones like this to share soon.

Our Story

Welcome to the wonderful world of Will! He is the most amazing little boy you'll ever meet. Will was born on August 30, 2004 at 12:28 pm. I had a completely normal pregnancy and delivery with Will, and there were no complications. He came home from the hospital and immediately began blessing our lives. For the first few months Will did everything all babies do. Then, around 6 months old he began being delayed in his motor skills. He wasn't rolling over or trying to sit up. He has low muscle tone. His doctor and I decided to take the "wait and see" approach since not all kids do everything right at the same time. At his 9 month well child check Will still wasn't sitting up. We decided to get early intervention services at that point. Will started with SoonerStart (Oklahoma's early intervention program) at 10 and a half months old. He was sitting up within a month, and we were thrilled! However, it was months before he made any more progress. He was also becoming delayed in his speech at this time. Will finally started "army" crawling at around 18 months and started crawling on his hands and knees at 21 months. He began pulling up at 26 months. All this time he was getting occupational, physical, and speech therapy at Children's' Medical Center in Tulsa, OK. Will would make a little progress, and then nothing for several months. It seemed like it was just long enough for me to get discouraged when he'd reach another milestone. Cate, Will's little sister, was born April 10, 2007. That really spurred Will's development. He started walking in May, at 33 months old. He still has a wide-based ataxic gate, but he can walk! Will said his first word in June. It is "juice!" So far it's his only word, but he's working on "look" right now. It's coming out as "ook" but he's trying. Will's developmental pediatrician, Dr. Edward Gustavson, diagnosed him with DAMP syndrome about 6-8 months ago. DAMP syndrome is a disorder that combines ADHD with developmental coordination disorder (DCD). Will also was autism, so this puts him into the severe DAMP category. He sill gets occupational and speech therapy and just started school at The Little Light House, a christian developmental center for children age 0-6 years with special needs. It is an amazing place filled with God's love. I hope you've enjoyed hearing our story and will want to get to know our family, and especially Will, more.