Growing Up

This Christmas has been a good one. We traveled to Alabama to spend the holiday with our families. Watching the children here, it's scary how much they've grown up since last Christmas. We see them everyday, so it isn't as obvious to us, but everyone back home just can't get over how big they are and how much they have changed. Cate even got her first haircut this week while we were home. She was actually pretty good. She only cried when they sprayed her hair with the water bottle. Will was very good at church on Christmas eve. He was actually one of the quieter kids in the service. Their routines have been totally thrown off this week, and they've missed several naps. While, I hate to leave our families and I'm dreading the drive back to Oklahoma, I am looking forward to getting back to our normal daily routines. I am not ready to go back to work, but it must be done. I'm heading to Little Rock next week for a 2 week rotation. I'm excited but I'm worried about my family being in Tulsa without me. Anyway, the kids are doing well, and that's a good thing. Hopefully I'll have some wonderful stories to tell about my adventures in Little Rock.

Sick Again!

Catiebug is sick again. I'm sure I've brought home RSV or something else to her. It seems like half our patient census has RSV right now. Cate has runny nose, cough, congestion...you know, the usual. She had fever on Friday, but none since, thank goodness. I hope she doesn't get bad. Some of the kids in the hospital are pretty sick, but they are very little too. I just hope she gets better by the time we head home on Saturday.
I'm so excited about being able to be home for Christmas with my entire family. This will be the first time that we've been home for Christmas with both kids. My parents, brother, and sister will be there too. It's going to be so fun! Like everyone else, it's a Christmas on a very tight budget, but I don't care. I wouldn't care if I didn't get any gifts as long as I can see my family. I miss them very much, and I can't wait until we're able to move back to Montgomery for good. Hopefully I'll be able to post some pictures next week of the kids playing with their grandparents and aunt and uncle. Until then...

Sorry!

I know I've been a total slacker, but I have a good excuse! I've worked 85 hours each of the last 2 weeks. Anyway, Will had his eye surgery yesterday, and he did well. His eye is red and swollen from it, but he seems to feel okay. He participated in the children's music at church Sunday night. He was supposed to sign something, but they had him go very last, and he was so tired and fussy that he didn't do it all. He looked really cute though! Cate had her Christmas performance at her preschool tonight. She did so good. They stood up on the stage and did motions to a few songs. It was very entertaining! I don't really have any other updates at the moment. I'll try to be better about updating the blog this month, but no promises. I'm 9 days into a 21 day stretch, so when I get home, I play with the kids and then go to bed. I hope you guys enjoy this video of Cate at her program tonight. More to come...
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Good News Bad News

Well, Will's labs all came back normal, and he hasn't had diarrhea since Monday, so things are looking up. He made it through school on Tuesday and Wednesday without any problems and is now on Thanksgiving break. I still don't know what's going on with his bruising, but we'll keep an eye on it. He is such a great kid. I just wish he could catch a break, you know?
Cate ran into a window sill today and tore her frenulum (the little piece of tissue that connects your lip to your gums). It keeps bleeding on and off, so we called the dentist. His nurse said there's nothing that can be done and that she could bleed all weekend. Something to look forward too, huh? Her school pictures came at great. I wish I could post them, but the website has a sign-on and password. Anyway, I'll post another picture of her so you can see how cute she is (again!).
Thanksgiving is coming up, and I have to work 24 hour shifts on Monday, Wednesday, and Friday of next week. We're planning on spending Thanksgiving day at my boss' house. She's been very kind to our family. She even put us up during the ice storm when we had no power. I'm sure there will be pictures, and I'll post them next week. Hope all of you are doing well.

This is gross. I apologize!

I warned you...so here goes. Will has had diarrhea for 2 weeks now. He'll be okay for a day, so we take him to school. They call us and tell us he had a blow-out and to come pick him up. We've been doing this for the past 2 weeks. We finally took him to the doctor last week, and the doctor ordered stool studies. Well, if you don't know, that is the cure for diarrhea. So, no poop for 2 days. Then, the blow-out to top all blow-outs. I turned in his poop today to the lab, and the initial test came back negative for blood. This was a huge relief because I thought I saw blood in his poop this weekend. There are two more tests pending. I'm hoping he just has some sort of terrible virus, and that it will stop soon. Being a doctor, I fear the worst. I've got to stop doing this to myself. The thing that makes me worry is that he seems pale to me. He's also eating less and more tired than normal. This is improving, thank goodness. He has always bruised, but there seem to be more than normal, and they're hanging around longer too. Again, I hope I'm just worrying about nothing. Please pray that Will is okay. He seemed much better tonight, and Jeremiah and I are hoping that we're wrapping up this disgusting period in our life.
Catiebug has yet another cold, but she is doing well. She is a feisty little thing. She likes to do whatever her brother does, which often gets her into trouble. She is learning to talk, and her favorite word is doodoo. Lovely, huh? I think putting her in preschool was definitely what she needed as far as her development. She has a speech therapy appointment in another week or two. I think we'll take her, but I'm not sure she'll need it for long. At least, I'm hoping she won't. I think that's about it for now. More to come.....

Done with PICU!!!

Well, I'm finally done with PICU!!! My last day was October 31, and I've never been more glad to be done with a rotation in my entire life. I did learn a lot. I got to intubate a patient 4 times and assist with some line placements, so that was good, but it's just not my thing at all. Anyway...
Will was supposed to have his eye surgery today, but he was sick all last week with some pretty nasty diarrhea, so it was postponed until December 8. God knew what he was doing though, because the change is allowing my mom to come for the surgery and allowing her to see the children's music and baby parade at church as well as attend Cate's Christmas pageant at school. I can't take time off to be with Will, which totally sucks, but at least my mom gets to come. He's better now...no more diarrhea (praise the Lord!).
Cate is doing well. She was her first ever school pictures tomorrow. I've ironed her clothes and laid everything out. I'm going to fix her hair before I leave for work in the morning, but I'm still nervous about how they'll turn out. I wish I could take her to school and make sure she looks okay, but I have to go to work. Pray she looks cute and doesn't get some ginormous scratch on her face or spill something on her dress.
Anyway, I really don't have any other updates right now. I am attaching a video of the kids playing that is pretty cute. I'll post again soon, when I actually have something interesting to say! Until then...
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Video of Will

So, I tried to post this video to facebook, but the video application is all jacked up, so I'm going to try and post it here. It's Will on the couch with me just being Will. He does display some of his speech accomplishments like saying hi, waving bye, and blowing a kiss. You'll also hear his babbling, which I'm convinced we'll find out one day is some foreign language and that he's actually completely verbal. Anyway, enjoy!
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I'm a Slacker!

I'm a total slacker, and I'm sorry I haven't posted in almost 3 weeks. I am working in the pediatric ICU this month, and it's an incredibly stressful and busy rotation. I can't even remember what has happened since my last post. Will is going to be having surgery on his right eye next month. Both of his eyes wander, but his right eye is worse. The doctor said it will probably take multiple surgeries to totally fix it. I think he's hoping that the left eye will fix itself. If not, we'll have surgery on it eventually. He had his annual check up and things went well. He's on the Prozac and Tenex, and the combination seems to be working. He definitely isn't calm, but he's better than he was...I think. Cate had her 18 month check up and is doing well too. We were able to cut her asthma medicine back to once a day, and she had some allergy medicine added. She weighs 22 lbs. 13 oz. She's still tiny, but she is growing, and that's all that matters. She is going to start speech therapy so she can catch up with other kids her age. Will is re-starting outpatient speech because he's starting to regress in his speech. We're hoping we can get their appointments together so we won't have to go up there so many times each week. Anyway, I think that's all for now. I probably won't post again until November, when I'm out of the PICU and life returns to some sense of normalcy. Thanks for your patience and understanding. More to come...

Big Bite!

We had our first incident with Cate at school today. While the teacher was changing diapers, a child in Cate's class bit her several times. One bite even broke the skin and caused her to bleed. I understand that kids bite. I'm mad because the teacher didn't call us right when it happened. She told Jeremiah about it when he picked her up. I think it happened close to pick-up time, but I still feel like we should have been called. The teacher filled out a form and put it in her bag. Anyway, I know things like this happen, but I'm just mad because we weren't notified. I feel like when a child has that kind of injury, parent should be called right away. I hope it doesn't happen again, and I hope she doesn't scar. The one on her face isn't too bad, so hopefully it won't. Hope my next post is a little more uplifting.

Brief Update

Will saw his pediatrician today for his 4 year well child check. Everything was good. I was worried Will hadn't gained weight, but he did. He weighs about 39-40 pounds. His weight wasn't exact because they weighed him on the "big boy" scale today, and he didn't stand very still. He is 41 inches tall. On physical exam, she said Will looked great. He has bruises all over from "just being a little boy." He has been sick for about a week, but she said she thought it was probably a virus and that he didn't need antibiotics. He also got his flu shot today. He'll get the rest of his booster shots at his next check up. That's all the news for now. I'm going to be very busy with work over the next month, but I'll do my best to post as often as I can.

Medical Update on Will

I talked to Will's developmental pediatrician Monday morning, and he asked all about what was going on with Will. I told him about how he was more agitated and aggressive than before the medicine. I told him how the teachers at school were complaining about his behavior. They said that they had to constantly be one-on-one with him and redirect him a lot more than normal. When I told him all of this, we asked me if they knew he was on the medicine. I think he was trying to figure out if they were really seeing these effects or if it was just because they knew he was on a new medicine. I told him they didn't know, because they didn't at first. We started the Prozac on a Thursday and told them about it on the following Wednesday after they commented on his behavior.Dr. Gustavson told us to stop the Prozac. He didn't start any new medications at this time. He's going to see Will again at the end of January, and I guess we'll re-evaluate then.
Will has also seen his ophthalmologist since I last posted. We had been patching his eyes because he has strabismus (wandering eye) in both eyes. This was our second round of patching, and it wasn't successful, partially because Will wasn't that cooperative with the patches. Anyway, Dr. Groves is going to operate on Will's right eye in November. He said it will probably take more than one surgery to fully correct it. I guess he's going to wait to do the left eye and give it a little more time to correct itself. I wasn't at the appointment, so I'm not 100% sure on that.
Will has his 4 year old well child check on Monday. Hopefully nothing unexpected will come up. I won't be able to go this one either. That's the sucky thing about being in residency. They only thing I plan on is him getting a new prescription for Claritin and getting his immunizations. I am also anxious to see how much he weighs and how tall he is. He had lost weight the last time we took him in. I don't think his height has been measured in a year. He is so tall and thin, I bet he's grown a lot. I'll hopefully post again on Monday after that appointment.
Will and Cate both have some sort of virus right now making them cough, have a snotty nose, and have diarrhea. I'm also starting to feel badly. Pray for us all that we get better soon.

Mini Laps 2008

Today was Mini Laps, the big fall fund raiser at The Little Light House. The theme this year was "Once upon a time." All of the kids dressed up as story book characters and got to make a lap around the little track on the school's campus. Will was Prince Charming, and he looked so handsome! He rode around the track with a little girl in his class who was dressed as a princess. Their "carriage" was a tandem bike that was decorated and had a stick horse attached to the front. I think they had a good time, but they were both definitely on sensory overload. I took a ton of pictures and a video of Will and Hunter making their lap. Will ranked 15th in fund raising, out of 64 kids. The kids get to pick a prize in the order of their amount raised. Will picked a CD player, which is exactly what Jeremiah and I wanted to get for him. There was a carnival afterward with food and games for the kids. We all had a great time and are very proud of the kids and the $335,800 they raised this year.
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Prozac Update

Well, Will has been on the Prozac for 6 days now. The doctor said that it takes 3-4 months to see the full therapeutic effect, but that bad side effects are usually seen withing the first 3-4 days. These bad sided effects include increased agitation, increased hyperactivity, and increased sleepiness, to name a few. Over the past week, I've felt like Will has more hyperactive and agitated than normal, but Jeremiah said that he was just his typical self. So, I let it go. However, today his teacher voiced a concern about Will's hyperactivity and energy level. Will has been at this school for over a year, and no one has ever mentioned Will's hyperactivity level. This is how I knew that my suspicions were true. They also said that due to Will's recent growth he's getting physically harder to control. This makes me really sad. I had high hopes that the Prozac may be the answer to Will's energy level. The main problem with his high energy level is that he isn't able to focus, even for 2 minutes, and this prevents him from learning a lot of things that I think he could learn otherwise. I called the doctor today to talk about this, but he's out of the office until Monday. So, we're going to continue the medication until we talk to him next week. Please pray that Will will calm down and be able to focus and learn at school. I'll post again when I have more news.

Developmental Update

Will had an appointment with his developmental pediatrician yesterday morning. It had been about 10 months since we had seen him last. He was happy with Will's progress in his motor and speech skills. He did seem a little disappointed that Will wasn't saying more. Anyway, the real news from the visit is this - he is starting Will on Prozac. He said that Will is so sensory overloaded, it's like he's trying to take an algebra test during a rock concert. He said that this sensory overload is the reason Will is constantly moving from thing to thing and can't focus on anything - that he's seeking more sensory input to somehow calm the overloaded feeling he gets. The doctor said that the reason Will has this sensory overload is that he has a seratonin deficiency. Prozac helps the brain keep as much of its seratonin as possible by blocking the re-uptake receptors that bring it out of the brain and into the blood. He said that it will take 3-4 months to see the full effect but that if Will was going to have any bad side effects that we should see them in 2-3 days. We start the medicine tomorrow. I'll post again after he's been on the medicine for a little bit and let you know how it goes. Please keep us in your prayers and pray that Will doesn't have any bad reactions to the medicine.

Happy Birthday Will!!!












I can't believe it, but my angel Will turned 4 on Saturday. He had a little party at school. They had pizza and I sent a cookie cake for the kids to enjoy. Will got to wear a birthday hat, and they sang to him. I'm sure it was a lot of fun. On Saturday, we had a small party for him. I don't think he knew it was his birthday, but he got to play with some friends and eat some cake. We also got people to donate to his school rather than bring birthday presents; so that was good. I think he had a good time. We had a puppy party because dogs are his favorite thing right now. He sees them and shouts "Ba!" He calls all dogs Ba because my parents have a dog named Beau, and that's how he pronounces it. Anyway, I'm posting 2 pictures from his birthday for your viewing pleasure!

Back to School

Both of the kids started school this week. This is Cate's first time being away from home during the week, and I was very nervous as to how she would do. She has started at Highland Park Learning School in their 2 day a week program. She goes Tuesdays and Thursdays from 9:30 to 2:30. There are five children in her class, 2 girls and 3 boys. So far, I think she's doing okay. They have play time, music class, art, a schoolastic lesson (they're learning letters, numbers, colors...stuff like that), lunch, and a nap each day. She isn't eating much because they have to bring all finger foods and nothing that needs to be heated. She isn't always the best eater anyway, so I'm not too worried. Their teacher actually gets 5 1-year-olds to sleep on a mat on the floor. I can't believe it, but apparently Cate slept on her mat for 50 minutes on Thursday.
Will started back at the Little Light House on Wednesday. He is in the same class he was in last year. There are 2 other kids who were also in his class last year, 4 kids who came from other classes, and 1 student who was on the waiting list. His class has 2 boys and 6 girls. The crazy thing is, the other boy also has Angelman Syndrome! Will and Henry (the other boy) are the only 2 in the school with AS and they're in the same class. They are friends too! They sit together on a bench during circle time, and their teacher told me Will is trying to teach Henry how to do things in class! I am so proud of my sweet boy. I think we're going to see some awesome development during this school year.
Baxter, our new puppy, is also doing well. He is chewing all of the kids toys and our carpet, so we're having to watch him very closely. Will seems to really enjoy him. I think Baxter knows he's here for Will. He always kisses him and he lies at the foot of Will's bed when we're putting Will to sleep. Cate isn't such a big fan because Baxter takes her toys and her cups. I'm trying to teach her to stand up to him and tell him "No no!" We'll see. Anyway, pray for us that Baxter will grow out of his chewing phase quickly.
More to come....

Welcome Baxter!

I know, I'm a slacker and haven't posted in a while. Sorry. Life's been crazy around here. Today, we added to the craziness...we got a puppy. Baxter, a chocolate standard poodle, joined our family today. He is 3 months old, and is adorable. He seems to be pretty laid back, which is a must in our house. Will loves him, and calls him "Ba!" It's the sound he uses for all dogs. Cate isn't sure about him yet, but I think as they get used to his occasional bark, they'll love him. I took a video clip of Will loving on Baxter. Baxter is Will's birthday present from his Gran and Poppy. As you may or may not know...Poppy gives the best prizes!
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Squeaky Shoes!



So, I'm trying to be better about posting more often, plus I have a funny story...so here goes!
I took Cate to Kathleen's Kids (a local children's boutique) today to buy the kids these matching fall/winter church outfits I'd seen. Today is tax free, so I thought, what better time to buy them. Anyway, I realized this morning that Cate has outgrown all of her shoes, so I took her over to the shoe section to try some on. I put these brown leather Mary Janes with bows on the toes on her. The lady said, "Put her down and let her walk." So, I did. She just sat on the floor for a minute. But when she got up and started walking, we both got a surprise. The shoes squeak, like a squeaky toy! It's hysterical! Then she started walking all over the store. She loves these shoes. She wouldn't let me take them off of her feet, so needless to say, we bought them and took them home...still on her feet. She went down for a nap when we got home, and I went to the grocery store. When I went in her room to get her up, she still had the shoes on! Jeremiah said he didn't want her to cry, so he let her sleep in them. It's so funny to me how much she likes the shoes. Normally, she doesn't like wearing shoes at all. Anyway, they are very cute. The bows are interchangeable, so you can coordinate with outfits, something very important to little girls. I've attached pictures of her squeaky shoes for your enjoyment. They come in all sorts of colors, so I see more squeaky shoes in our future!

Just One of Those Days

Hello everyone!
Today is just one of those days. You know, where you feel a little down and sorry for yourself and your lot in life. As I write this, I'm watching my beautiful son play with Maggie and Bo (my mom's dogs). He doesn't have a care in the world. He is so sweet and happy the majority of the time. He keeps opening doors he isn't supposed to open and messing with things he isn't supposed to be touching. I tell him "No no!" and he stops for a moment, then it's right back to it! I keep wondering if he really understands what I'm saying to him. At times he seems so smart. Like last night, he showed my aunt all the signs he knows. When I'd say the word, he'd do the sign without even thinking about it. That makes me think, "Wow! My boy is so smart!" Then I have to tell him other things a million times, and he still doesn't do it. I don't know if it's him being an almost 4-year-old boy or if it's him having AS. It's really hard to tell. Then I look at my beautiful daughter toddling around the room acting silly and imitating her brother. I think about all the things she'll get to do that her brother never will, and it makes me very sad. It's almost like a state of mourning for all the things that are lost to my son. It's bitter sweet for Cate to be "normal." On the one hand, I'm so happy that she's meeting all of her milestones and doing all that she's supposed to do. On the other hand, I'm sad that she's growing up so fast, and I worry if she'll always love her brother the way she does now. I wonder if she'll understand when she gets older and if she will feel like it's unfair that her brother is special when all her friends have "normal" siblings. I try to take the "one day at a time" approach to all of this, but every once in a while, things build up and you need to have a good vent or cry. Today is one of those days. Hopefully tomorrow will be better. Please continue to pray for Will, Cate, and our family. We treasure every prayer lifted up on our behalf. We couldn't make it without God and without your lifting us up to him. I hope everyone reading this is having a better day than me. Hopefully I'll have some more good news to post soon. Until then...

Beach Trip





We drove from Tulsa to Montgomery on Saturday, and then we came with my parents down to Fort Walton Beach on Sunday. The kids have had such a good time. We've been to the pool each morning, and they swim for almost 2 hours. Will absolutely loves the pool. It's very common for kids with AS to love the water. This has been like heaven for him. It was Cate's first experience at the beach. Neither of them are particularly in love with the sand or the beach, but they both love the pool. I wish we had one at home. We'd probably live in it. Cate even made a friend while we were here. We met a sweet family with a little girl named Abigail who is only 2 days younger than Cate. I've attached a few pictures so you could see what a good time we've had. We're going back to Montgomery tomorrow to spend 5 days before we have to return to Tulsa. Enjoy!

Doing Great!

Will and Cate are doing so great right now!
Cate had her 15 month well child check yesterday. She weighed in at 22 pounds! Her weight came up on the chart from 10% to 35%. Her height is 30 inches, also 35%. She is walking everywhere. She is starting to say a few words, mainly the words Will says. She's becoming his little mirror image. The pediatrician said she looks great and is a "normal healthy baby." That was music to our ears! She also has gone 5 weeks without being sick! We may have broken the 4 week "sick cycle." Pray this well period continues.
Will is just doing great. He finished school for the year yesterday. He has a month off and then starts the new school year in August. He has taught his little sister how to give kisses! It's really cute. Today they were giving kisses to each other! His communication continues to grow. He still only has 4 words, but he is learning more signs and gestures that help him let us know what he wants. He has also learned to open (and pour out!) his sister's cups. That's fun to clean up....not!
Sorry it's been so long since I last blogged. Hopefully I can be better about that. More updates to come!

Making Great Strides

My little Catie Bug is making some great strides in her motor and speech development! She has started taking several steps in a row and today she said "juice." I'm so excited! I think she'll be walking well soon. I hope so anyway. I'm attaching a video of her walking tonight. Enjoy!
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She walked!!!


Cate took her first real steps last night. I think it kind of surprised her. Today, she walked from the toy chest almost to the ottoman, which is probably about 5-6 steps. Not a lot, but still exciting! She's still crawling and cruising mostly, but she's getting braver about letting go and taking a step or two on her own. I think she'll be walking well before we know it. Hooray!
PS - Will is much better. Thank you all for asking about him and praying for him.

My Poor Will

Will has strep again. It's really bad. His tonsils and the back of his throat are covered in white pus (sorry if that's gross!). He hasn't eaten in 2 days and has only had 1-2 oz of fluid since Friday. He just lays around and cries. I know he feels terrible. He's running fever with it. It's been staying in the 102 to 102.7 range, which makes him feel even worse. The other issue with the fever is that it makes him more likely to have a grand mal seizure. He had his first one the last time he had strep about a month ago. I've been treating him with Tylenol and Advil around the clock this time trying to prevent any seizures. He'll have to miss school tomorrow, which we all hate. It's so good for him to be there. Pray that Will gets better very soon.
As far as updates go, Will went to the ophthalmologist on Tuesday. We're patching his eyes again. The right eye wonders more than the left, so we're patching the left eye for 2 days, then the right eye for 1. He does okay with it as long as we tape the patch around his head! I feel kind of sorry for him, but we only do it at home, so people don't stare at him any more than normal when we're out and about. Cate took a step and a half today! Hooray! I think we're on the verge of independent walking. I certainly hope so. She was sick the first of the week and is better now, so we're hoping she doesn't get sick again with what Will has. I swear, if I could keep my kids healthy, I'm not sure I'd know what to do with myself! I really hope my next post has nothing to do with my kids being sick and is all about how Cate is walking or how Will learned a new word or something awesome like that! We'll see....

Good Week


Well, we had a good week this week. Both of the kids got over their strep infections and are back to normal. Will started back to school yesterday after a 3 week break. I think he was glad to go back, and I know Jeremiah was glad for him to go back. We love Will very much, but he is exhausting! He'll be in school for 6 weeks and then have another 3 week break. The new school year starts in August. Cate is growing well from what we can tell. She hasn't been weighed in 6-8 weeks, but she looks like she's gaining to me. She still isn't walking, but I think she's close. Once or twice she's really thought about letting go but decided against it at the last minute. She isn't saying any words yet, and that worries me. By 12 months, she should be saying mama and dada to the appropriate person and have 1-5 other meaningful words. She says dada, but not appropriately, just whenever she babbles. She does say uh-oh, and uses it appropriately most times, so that's good. I'm sure I'm just overreacting because of Will, but I just really want Cate to develop normally. She starts mother's day out at Highland Park Learning School in August. I think this will help her development a ton. Being around "normal" kids and getting that socialization will be good for her. They also do music, art, school lessons appropriate for age, and a lot of other stuff. I think it will be very good for her, and it will give Jeremiah 2 days a week to himself to do housework, run errands, and rest. Will goes back to the ophthalmologist in a week, and we'll find out if he's going to get glasses,go straight to surgery, or just wait on his eyes wondering. They are getting worse, so I won't be surprised if we get glasses this visit. Anyway, that's all there is for now.

Sick Again

Cate is sick again. It was exactly 4 weeks from her last upper respiratory infection that this one started. This time Will got sick too. He was diagnosed with strep. The doctor treated Cate too in case she had it, but she wasn't tested. I'm really really tired of her getting sick. And, I'd really really like to know for sure that she doesn't have CF. I started not to worry about CF after the pulmonologist appointment. The asthma medicines seemed to help a little; she isn't coughing as much when she isn't sick. Then, like clockwork, she got sick again, and I start to worry again. Help!!! Please pray that they both get better and that Cate stops this cycle of getting sick every 3-4 weeks. Hopefully more encouraging updates to come.

It's Official

It is official. Will has Angelman Syndrome. This is what I have felt in my heart for the past two years is the cause of Will's "specialness." We saw a specialist in Birmingham, AL (at UAB) who gave Will the clinical diagnosis of Angelman Syndrome. This is a genetic syndrome that is confirmed by lab work in 80-85% of cases. Because Will's lab tests have been normal, we had to see a doctor who had worked with enough AS kids to know enough to give a clinical diagnosis. And he said Will fit the picture of AS to a tee! Everyone keeps asking me what AS is, and rather than try to explain it in this post, I'll give the Angelman Syndrome Foundation website, and you can read until your heart's content! The address is www.angelman.org.
And on a side note, Cate is sick AGAIN! The asthma meds are working between illnesses, but right on cue, she got sick again exactly 4 weeks from her last respiratory infection. Pray for her that she gets better and that she does only have asthma.
More updates to come.

My Smart Boy!

This afternoon Will and I were playing with his MagnaDoodle. I'm sure you all remember this toy. It's the one with the special pen that writes on the surface and has the knob you move from side to side to erase what you drew. Anyway, I wrote Will's name on it and showed it to him. Then he pointed to himself, pointed to his name, and pointed back to himself. I tested him and he did it again. Then I put Cate's name on it, and he just stared at it. I think he can read his name, or at least recognizes it!!! This may not mean a lot to some people, but to me it's AWESOME! I always knew Will was smart, and that he just can't express everything he thinks or feels. This let me know I'm right. Just wanted to share with you all how smart my BudBud is!

More Good News (Sort Of)!




I took Cate to the pulmonologist in Oklahoma City yesterday. He said that Cate's history and chest x-ray findings are consistent with asthma, not cystic fibrosis! Hooray! He said with her low sweat test score and no mutations showing up so far, tha he would be shocked if she has CF! We are still going to have our pediatrician do the full CF mutation panel so we can completely rule out CF and put our minds at ease.
The pulmonologist is starting Cate on an asthma regimen. This included twice daily inhaled steroids, a short course of oral steroids, and albuterol as she needs it. He said we should start seeing some improvement over the next few weeks. If is not asthma (which is very unlikely according to the doctor), then she won't get any better and could possibly get worse. If this happens, he'll do more testing in 3 months when we go back. I'm praying that it is asthma and that she does get better. Plus, we'll have already done the full mutation panel and will know for sure that she doesn't (hopefully!!) have CF.
More updates to come. When we get the results of the mutation panel (in 5-6 weeks), I'll let everyone know. As for now, please pray that this is asthma (weird to pray for that I know) and that the medicines help Cate.

Good Results

Cate had another sweat test today. This is part of the work-up for cystic fibrosis. Her first result was 41, which is indeterminate (too high to be negative and too low to be positive). The result today was 18!!! This is well within the normal range. I was very excited to hear that. It doesn't completely rule out the possibility of cystic fibrosis though. There are many people with CF who have had sweat test results as low as 10. I'm hoping this is a good sign and that Cate doesn't have CF. We're going to see a pulmonologist in Oklahoma City on Tuesday. I am going to ask him to do a test that tests for 1500 mutations that cause CF. If it's negative, that means there is a less than 1% chance she has CF. If she does have CF, it should pick it up. We're praying that she's just kind of puny and that everything will work itself out. Pray with us that she doesn't have this disease and that she'll gain weight and stop having all of these respiratory infections. I'll post again after we see Dr. Royall on Tuesday.

Worried...Please Pray

Cate is sick again. She has an upper respiratory infection. She just got over one that started two weeks ago. This makes a total of ten since she was born. This is a little unusual since she doesn't go to daycare and isn't around other children much (other than church on Sundays). The reason I'm concerned is that (as some of you know) her newborn screen was positive for cystic fibrosis (CF). We didn't worry too much at first because we have no family history, and she was doing so well. Then, she started falling on the weight portion of her growth chart. So, we had a sweat test (supposedly the confirmatory test for CF) done, which was indeterminate. Her score was too high to be normal and too low to be positive. This lead the doctor to do an "expanded mutation panel." This tests for 97 of the mutations that cause CF. It was negative (yea!). But, when the doctor called to tell me the result, he said there are over 1500 mutations that cause CF, so this doesn't mean she doesn't have CF. I was like, great! I tried to forget about it again, but then she started having all of these colds and respiratory infections. She has even been hospitalized once with one of her infections. She has some other symptoms that are characteristic of CF that I won't go into, but needless to say, I'm worried that she has CF. CF is a chronic disease with no cure. It shortens the lifespan to about 30-35 years. People with more rare mutations can have a slightly better prognosis. In fact, there are some people on the CF forum in their fifties. We're going to talk to Cate's pediatrician Monday about going to see a pediatric pulmonologist who specializes in CF. Hopefully we can get some answers. I hope with all hope that Cate is fine and she doesn't have CF. However, if she does have it, it's important for us to find out as soon as possible so she can get the treatment that requires. Please pray for us as we go on this journey. I'll be posting more updates as they come.

Test Results and More


We got the results on Will's UBE3A test back last week. They were negative. I know to most people this would be great news, but I was actually a little diappointed. I know in my heart Will has Angelman Syndrome (AS), and there is even a doctor who is a national specialist on AS who thinks Will has it too. Now, we'll have to wait on a clinical diagnosis. It doesn't change who Will is or how he would be treated (therapies, etc), but it would have made other things easier. Oh well, I know God knows what He's doing!
I also spoke with that doctor about Cate. I told him about her trouble gaining weight and all the colds and respiratory tract infections she gets. I told him that her newborn screen was positive for cystic fibrosis (CF), that her sweat test was equivocal (no help at all in diagnosing her with CF), and that her mutation panel was negative (makes it less likely that she has CF). I asked him if she should undergo futher testing to diagnose CF, and he said it sounds like she has a malabsorption syndrome and we should see a GI doctor. He said CF would be less likely. This is a good thing because the average life span for someone with CF is 30 years, and malabsorption syndromes are treatable. So, now we're in the process of getting Cate in to see a pediatric gastroenterologist. There is only one group here in Tulsa, and they actually recently had a partner leave, so it will probably take 2-3 months to get in. Pray she does well and continues to grow and that we'll get an answer, one way or another, as to what's going on with our teeny tiny princess!

Happy Birthday Cate!

Yesterday was Cate's first birthday! She had her check-up, and the doctor said she looked great. She weighed in at a mean 18 lbs. 8 oz (10th percentile) and was 29 in. long (50th percentile). He is pleased with her growth and development.
In other news, we're still waiting for the UBE3A test results for Will. The doctor at Baylor said it would take 3-4 weeks, and it's been 2. Pray that I have the patience to wait another week or two without going nuts. More updates to come.

Fantastic News!!!

Get this! We have been trying to get this special bed for Will for about 6-8 months now. Our insurance company denied it and said it wasn't covered under our policy. The bed costs $6000, which we cannot afford. We have been trying really hard to figure out something else to do because he is too big for his crib, and it is no longer safe for him to sleep in. Well, yesterday we got a call from the medical supply company saying Will's bed was in and they needed to set up a time to deliver it and set it up! Jeremiah spoke with them today, and they're going to deliver it tomorrow morning at 9:30!!! I don't know who paid for it or if our insurance or Will's medicaid changed their minds. I really don't care. I can't believe we're getting this bed. It truly is a miracle!!! More updates to come.

Mostly good news this time

So, an update on the kiddos. First of all, Will didn't have to get glasses this visit. We're thrilled because we had no idea how we were going to keep them on him. The opthomologist said he looked pretty good right now and that he'd see us back in June. I guess we'll wait and see what he says at that visit about glasses, but for now, we are glasses free! Secondly, Cate gained another 4 ounces! Hooray! She is around the 7%, which is where she was at her last weight check. She really seems like she's doing well to me. She finally looks like she's filling out some. Her appetite certainly isn't the problem. She eats like a little piggy. Dr. Pfanstiel seemed happy with her weight, and we certainly are. Now for the tiny bit of bad news...Cate will be getting tubes put in her ears on Monday. The doctor we saw today is super nice and was able to get the surgery done quickly. It's not a major surgery, but it is a surgey. There is still anesthesia, so there is still a small risk. Pray that the doctors will do exactly what they are supposed to and that the Lord will guide their hands as they work on Catie Bug. Pray that this surgery will correct her problem and that she won't need any more antibiotics or surgeries. Finally, pray that her recovery goes smoothly and that we don't have any complications. I'll update you after her surgery.

More Surgery


Again, sorry for the delay in posting. My life is going ninety to nothing right now. I hardly have time to eat or sleep, much less blog. Anyway, I took Cate to the doctor today because she has had an ear infection for almost 3 weeks and is still pulling at her ear, running fever, and very fussy. So, the doctor said her ear doesn't look infected anymore, but there is a lot of fluid in her ears and she's going to need tubes. I'll call the ENT office tomorrow to make an appointment for her. I guess we'll find out more at that time. Just be praying that Cate will feel better.

Will goes to the opthomologist this afternoon and we will most likely be getting glasses. I'm dreading that. I don't know how in the world we're going to keep them on him. I guess that's another prayer request. I'll post again (hopefully soon) and let you know how this goes.

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!