Good news, bad news

Well, Mini Laps is over and it was great! Thanks to all of your support, Will raised a little over $6400! We exceeded our goal of $5000 thanks to all of you. We are so grateful to have your prayers, support, and concern for Will. He is doing well at school. This is his last year at The Little Light House, a thought that makes me want to cry. We will be moving to Little Rock in June, and he will start kindergarten there in the fall. We're on the look-out for a good public school with good special ed for Will there, so if any of you know of good special ed elementary schools in the Little Rock area, please let me know.
I was able to go to Cate's speech therapy today (for the first time in a long time). She has really been doing well at home with her speech. She's up to probably 150 words and is using 3-4 word sentences and phrases. She is not, however, talking at school or church. Her speech pathologist was hoping that this was just part of the usual progression of a child with expressive speech disorder, so we waited. She told us today that she thinks Cate has selective mutism, which is a disorder where the child talks and interacts in one environment but doesn't in another environment. She told me not to freak out or go googling it, and I'm not, but I also had to let it out. You guys are always so supportive and pray for us, so I wanted to let you know so you could pray for Cate. We're trying some techniques that are supposed to help her, and her prognosis is very good according to her speech pathologist. We are going to see her pediatrician to get the official diagnosis, but our speech path specializes in expressive speech disorders and this area, and says she meets all the criteria for diagnosis.
Anyway, that's the update for now on the kids. I'm in the NICU at OSU MC. I'm done with wards at Saint Francis!!! Hooray!!! I have several electives coming up and then will start my fellowship in developmental pediatrics in Little Rock in July. I'll be going to the AOA convention in New Orleans Nov. 1-5, so if you're in the area, come see me! That's all the excitement in our lives right now. Hope to hear from you guys soon.

Will's 5th Birthday






Long Overdue Update

I am the absolute worst about posting updates, and I apologize. Well, Will and I went to the neurosurgeon on the 25th, and we got great news. Rather than do surgery right away, he decided to wait 6 months and do another MRI to see if the syringomyelia has changed at all. I was surprised but very happy to hear this. Will started his final year at the Little Light House last week. He is in a new room (the purple room) and doing well. They are in full swing with their big fall fundraiser, Mini Laps. If you want to know more about Mini Laps and help Will raise money, go to this website and you can donate directly from there: http://littlelighthouse.donordepot.com/civicrm/contribute/pcp/info?reset=1&id=45
Cate started her second year of preschool at Highland Park Learning School. She is in the green room this year. There are 5 kids from her class last year and 2 new kids in the class. I think she really enjoys it, and I know it's good for her development. She also goes to the Little Gym once a week for "gymnastics" class.
I am in my last month at Saint Francis Children's Hospital. It is so stinkin' busy. It's just me and one intern. We round everyday until 6:oopm. We are averaging 26 patients each day - which is a lot with just two residents. I come home super tired and fall asleep on the couch most nights.
Jeremiah is still staying home with the kids. He is so excited about college football, but he's not very happy about the way Alabama is playing tonight.
We got a new pastor at church, and I think he's going to be really good for Woodlake. He is young and has a family. He is a wonderful speaker and has a heart for the lost. He also has a passion for passing on our faith to the next generation. It makes me even more sad to think about leaving Woodlake next summer when we move to Little Rock.
Anyway, that's all I have for now. Hope all is well with all of you. I'm going to post some pictures from Will's birthday for you to enjoy. Hopefully I'll be back with another update soon.

Spine Surgery!

We got Will's MRI results yesterday. His brain is fine, but there is something on his spine called a syrinx. A syrinx is basically a fluid filled cyst or tumor (not cancerous) that forms on the spinal cord. It can cause all sorts of problems, and the doctors think it may be responsible for some of Will's signs and symptoms. His neurologist called us today and said the neurosurgeon had looked at the films. He agreed that it was a syrinx and not a normal variant as we had hoped it might be. He also said we need to be seen in neurosurgery clinic soon to arrange treatment. The only treatment I can find is surgery to remove it. His symptoms probably won't change as the sugery tends not to reverse things but does prevent any worsening. I'm expecting to hear next week about when he'll be going back to Little Rock to see the neurosurgeon, and I assume that we will get a date for surgery then. This, of course, brings about lots of things to pray for. So, please pray for the following:
1. Will's symptoms don't get any worse before this can be taken care of.
2. We can get seen and scheduled in a timely manner.
3. I can get someone to cover my shifts at the hospital so I can be in Little Rock with Will.
4. God will provide financially for all of the medical bills this will bring.
5. We can have enough help with Cate and the house while we're gone.
6. Peace for all of us, especially me, and I worry about things that could go wrong before, during, or after the surgery.
7. A quick recovery for Will.
8. That nothing else goes wrong.
This has been an extremely trying week. We've lost Will's medicaid. We'll probably be losing his SSI. Social security is asking us to repay $5700 of "overpayment" that is their fault. Will has been sick with intermittent fevers. Work is super stressful, and now this. I feel like my life is best described by the phrase "when it rains it pours!" I feel completely overwhelmed, sad, worried, stressed...I didn't mean for this to turn into a pity party. My main concern is my son. Anyway, I'll post more when I have some news. Until then....

Trip Home

We have spent the last week at home in Alabama with our family and have had a wonderful time. We came to town for me to be in a wedding of two of my friends from med school/residency. The crazy thing is that the groom is from Alabama, but I didn't meet him until residency in Oklahoma. The wedding was beautiful and we had a nice one-night vacation from our kids. We love them very much, but as you all know, everyone needs a break now and then. We've also been able to visit with some other friends and family. It has been a very nice week. We are leaving tomorrow morning and heading to Little Rock. We're going to visit a school there on Monday that is for special needs kids that we're considering for Will when we move there next summer. Then it's home to Tulsa. Sorry this is such a short update. Hopefully there will be more exciting stuff to share soon.

Neuro Update

Surely by now you have come to expect the 4-6 week breaks between my posts. My appolgies. Life is crazy busy, and I've just come off two straight months at the hospital. Anyway...
Will and I left Tulsa this morning at 5:30 to drive to Little Rock for his appointment with his neurologist. The drive went well; he slept for the first 2-2.5 hours. Once we were in with the doctor, she began to notice some changes in his neurological exam, changes that weren't good. His deep tendon reflexes are increased from his last visit. He also had some motion that shouldn't have been there (when she checked reflexes on one leg, the other leg moved). Then I told her about how I've seen Will's leg move/twitch spontaneously 2 or 3 times over the last few months. All of this plus his very unsteady gate lead her to believe that lab work and imaging studies were needed. She acted like none of this was a particularly good thing. She drew the lab today to check for chromosome problems and other genetic issues (apparently the technology is much better since the last time he had this done) and also a muscle enzyme level to see why he is having some weakness. She also wants us to come back to Little Rock to have an MRI of Will's head and entire spine done. This will all be done either under general anesthesia or at least sedation. Point being, it will be an entire day affair, and I don't know when yet. It is so hard for me to get time off to take him there, but we'll work it out. After all of this, it left me scared and worried. What if we're wrong about what we think is going on with Will and it is actually something worse? What if it is progressive? It just doesn't make since. He's been doing so well with his communication lately, but his motor stuff has been off. I don't know what to think. I mean, I just want an answer. But, I want the answer to be something we can deal with. Anyway, please pray for Will. Pray that the lab tests will come back quickly and that they will give us answers. Pray that the MRI's will get scheduled quickly and at a time that I can go and be with him. I guess that's all for now. I'll update more when I get results.

I know....I know

I'm sorry I've been such a slacker about blogging. I've been on wards (in the hospital) at Saint Francis. With my 12-13 hour days, I'm so tired when I get home that I don't even think about posting. And, to make things worse, I'm on wards again for May. Woohoo! Anyway....
Will started taking Focalin XR (an ADHD medicine) about a month ago. We also increased his seizure medicine. Apparently he was have several seizures everyday, but Jeremiah didn't realize that what he was doing was seizing, so it went on and on until I figured it out. (Will's seizures aren't the kind where you fall down and shake all over.) Anyway, since we've made those adjustments to his medications, he has been doing AWESOME! His teachers say he is vocalizing more and using more signs. He's also able to match a few simple pictures - something he's never done before - and make some associations. Easter week they were learning about the Easter story. His teacher held up a picture of the cross, and Will pointed to the Christian flag and soluted! I cried when I found out. I'm just so thrilled he is making progress. He has also started saying his fourth word - cookie! he learned this one thanks to his little sister who is always asking for cookies. Will's seizures are back under control since the increase in the medicine. Knock on wood, he hasn't been sick recently and is doing really well overall. We may start trying to potty train soon, depending on recommendations from his teachers and therapists. Keep us in your prayers about that.
Cate is doing great too. She has been in speech therapy for about 3-4 months now, and her vocabulary is exploding. She still doesn't have as many words as she should for her age, but she is catching up. I swear it's like she has a new word almost everyday. She hasn't been sick recently either (knock on wood again!). Her Singulair and Flovent (asthma and allergy medications) really help her. She recently turned two and does at time act like a "terrible two." She is generally a very good natured child. She is really funny too. She loves to dance, and dances to American Idol with me every week. She also dances everytime the I-Phone commercial comes on. She had her two year old well child check 2 weeks ago and is growing well. She weighed 27 pounds and is 34 and 1/4 inches tall. She has definitely made up for that time period when she was "failing to thrive."
Jeremiah is still a stay-at-home dad and loving it. I'm sure he doesn't love it when I complain about the house being messy though! He is so good with the kids, and that really is the most important thing. He also helps me a lot by feeding them before I get home from work, getting them to school and therapy, etc. I do wish he was a better housekeeper, but hey, if I have to pick between a good dad and a good housekeeper, dad wins out every time.
I'm wrapping up my second year of residency. I officially become a third year on July 1. It will be my last year of residency, and boy am I ready. I have senioritis badly! I found out last week that I got the fellowship position in Little Rock. This is my first choice, so I'm really excited. I can't wait to only be doing development and behavior and not have to worry about all the other stuff I don't like as much. We're researching schools for Will. That will really determine where we live, especially if he winds up going to public school. I want him to be at the school with the best special education program in Little Rock. There is also a private school for special needs kids that we're looking into. It's fairly expensive, but definitely not what they could charge for all the services the kids get. I also have a friend in Little Rock who I went to med school with, so that will help. Her church has a ministry in their children's department just for special needs kids. How cool is that?! We're going to visit for sure. We'll be coming home to Alabama in June. My best friend from med school is getting married, and her fiance is from Alabama. How crazy is that? I mean, she's from Oklahoma, he's from Alabama but is doing his residency in Tulsa. The world really is small. Well, I'd better run. I have to get up at 5:10 in the morning. Hope you all are well, and I'll try my best to get at least one blog in this month...but no promises!