Monday was a big day. Like BIG. And I should apologize in public to my husband because when he asked me how long I expected our appointment to last in St Louis, I told him a couple of hours. Y'all, we were there for six and a half hours. I'm not sure who got tired/irritable/frustrated first, us or Lawson. But, I can say that the trip was 100% worth it. And I am forever grateful to the people who pushed us to go out of state and the people who helped pay for us to go out of state, and also the people who prayed while we were there and lastly my mother in law who watched the other kids while we were gone.
So, lets recap. Lawson has been through the following:
Routine eye exam that revealed his optic nerves were bulging into his eyes
More vision screenings, more eye pictures, another eye ultrasound
MRV (like an MRI, but looks at blood vessels)
Lumbar Puncture #1
Diagnosis of Idiopathic Intracranial Hypertension
Hospitalization after diamox made him sick
Neurosurgeon in OKC
New diagnosis of cranialsynostosis and referral to plastic surgeon to discus surgical options
St Louis to see neurosurgeon for second opinion and then an order to go see the ophthalmologist in the hospital
More vision testing
GO HOME WITH CLEAR ANSWERS
So, what happened in St Louis? What is the new diagnosis? Nothing. Lawson has nothing. His eyeballs/optic nerves formed funny when he was just a baby in my tummy (lol). But seriously, they did. Had we seen this ophthalmologist first we never would have had anything extra. No meds, no lp's, no MRI's, no putting him under four times. Nothing. We would have been sent home with a clear bill of health.
But wait, Tracy?!! What about his head? Didn't a plastic surgeon and a neurosurgeon say his head was formed wrong? Yes, yes, they did. But they were wrong. His head is fine. Like perfect actually. Those are the words the EXPERT in this surgery said to us. "His head is perfect."
And what about those super high pressure readings from the lumbar punctures? False. There is apparently evidence that points to anesthesia causing high intracranial pressure. And since Lawson was sedated during his lp's, his pressure readings were not accurate.
So, first...this is all awesome news. SUPER AWESOME news. No more diamox! No more lasix! No surgery for a shunt or to reshape his skull!! Next, Jason and I will decide between Lawson having a procedure done that involves putting a pressure monitor in his head for a few days while he stays in the hospital for them to continuously monitor his pressure or just going frequently to our eye doc to watch his optic nerve to make sure it stays the same. Our doc in St. Louis believes we will see his pressure is totally normal and that the internal monitoring test will confirm 100% that Lawson is a-okay. Jason and I are more cold, hard, fact kind of people so we wanted the internal monitoring done so we could put all of this behind us, but our neurosurgeon in OKC refuses to do it. She got her feelings hurt when she was told she was wrong. Oh well. So, for now we wait. Lawson is off his meds and we go back to our eye doctor in three weeks for her to look at his nerves. We will start making other decisions after that appointment.
All that being said....
PRAISE JESUS! This is such an answer to prayer! We are just so thankful. We are also feeling all the feelings of being upset/angry/frustrated that we have been dealing with wrong information. We are also angry/upset that we have put our kid through all of this unnecessary crap. We basically are feeling all of the feelings and processing all of the information and still having to deal with a ton of doctors that now all disagree with each other and have their egos bruised from being told they were wrong.
We promise to keep you updated and let you know what happens at the eye doc appointment! Thank you so much for all of your support and prayers.
Wednesday, September 28, 2016
Friends, in order to just be able to relate information to our friends and family we have decided to kind of “go public” about some health struggles Lawson has been facing the past six months. We have waited this long to talk about it on the internet because of a few reasons. But ultimately, we arrived at the decision to share so that we could get info to people faster and without making a million texts and phone calls and also because we would love your prayers during this time.
Back in April Lawson had a routine vision screening where it was discovered that his optic nerves were bulging into the back of his eyes. After several tests (MRI, MRV, eye ultrasounds and a lumbar puncture) he was diagnosed with Idiopathic Intracranial Hypertension. We were confused because IIH is a disease that largely affects older women who are overweight but can in very (very) rare cases can be found in toddlers. Lawson is a very skinny, four-year-old, BOY. But, because the risk of losing his vision outweighed the side effects of the medicine, we started a very high dosage of a medicine that made Lawson lethargic, caused him to have no appetite, and caused a constant pins and needles feeling in his hands (he would tell us that his hands were sparkling).
We had two more lumbar punctures during that time and his pressure was not improving. And then, one weekend Lawson got very sick and was admitted to the hospital. The cause was the medicine he was taking. So the only meds that could help him were making him very ill.
|Lawson and Weston playing at St. Francis after we stopped his meds.|
Fast forward past several more doctor appointments including a neurologist and a neurosurgeon plus a CT scan and it has been determined that Lawson does not have IIH and instead has a condition called Cranialsynostosis. Basically, his skull fused too early resulting in a misshapen skull that is putting pressure on his brain. The only solution is a surgery to reshape his skull. Jason and I have an appointment in St Louis for a second opinion and we also have a surgery consult scheduled in OKC during the month of October. Hopefully we will leave both of these appointments with a firm date for surgery and confidence with the doctor we choose to perform the surgery.
How can you help? Well, for now, we need prayer. Prayers for peace and for wisdom for us as we select a doctor for the surgery and prayers for us as we travel. Also, prayers for Lawson. In addition to surgery he will also have to have one additional lumbar puncture in October to check pressure and drain fluid off from around his brain. The last lumbar puncture was pretty traumatic and it took three sticks before they were successful. Luckily, he is completely knocked out, but there are also risks with anesthesia. And lastly, just prayers for our family as we navigate through a very taxing time. The emotional toll, the financial toll and also just the stress on our time and ability to be a normal family has been difficult to say the least.
We appreciate all of prayers we can get!
Special thank you to everyone who has already been praying for us and believing for healing for Lawson. And for all the people who have babysat for us or brought us food or helped us in so many other ways. We love you all so much!
Monday, March 28, 2016
Y'all. I know Route 66 was like for-ev-er ago, but I realized when I was out running this week that I was FINALLY ready to write about the experience of running my first ever marathon. After Route 66 and really up until about a week ago, even the thought of writing about running was upsetting. An injury that had me sidelined also had me feeling down in the dumps about running. And while I never (like never, never, never) thought I would be depressed about NOT running, I was. Turns out, running is not just something I want to do, but something I like to do. Scratch that. I don't LIKE to run, but it does help me to be more calm, more confident, and less crazy in general. So, here goes. My recap of my first ever 26.2.
Training: Training is no joke. And frankly, I would not have been able to complete a marathon without some pretty amazing training partners. My sister, Carri, and my friend, Megan, were amazing during training. They got up early, ran in crazy heat, hills, wind, whatever. And they didn't laugh at me when I wrote directions down on my arm or get mad when I had to take walk breaks. Okay, Carri did laugh about the directions. She also laughed when I got down on my stomach in a very swanky part of T-Town to drink out of someone's sprinkler.
I can't really go on without mentioning what an amazing husband I have. Jason watched the kids, planned routes, rubbed my legs/feet when I was sore, let me take naps, bought donuts, cheered me on at races, ran with me at races and generally was my biggest cheerleader/supporter. Without Jason, there would be no running. He is amazing and I am so thankful he said yes to the commitment of me training for this race!
Leading up to the full, my training included the Hot Chocolate 15K, Aquarium Half, A2A Half, Tulsa Run and the Jenks Half. I had Jason and/or my sister with me in those races!
After Hot Choc 15K
|the infamous (and incorrect) arm directions|
|my post 20 mile feet|
|Before Tulsa Run|
|I ran from Jenks to downtown Tulsa to meet my fam and then ran in the Tulsa Run!|
|This is after the Jenks Half which was our third half marathon of 2015!|
|A family that runs together, stays together!|
The race: Seriously, y'all. I am never, never, never running it again. I did the Route 66 half in 2014 and said then I would never do it again and then I went and signed up for the full. BIG MISTAKE. The first word that comes to mind is hills. That is also the second, third, fourth and fifth word that I think of when I start to think about this race. Luckily, I had my sister with me for the beginning part (and honestly can't remember what mile we parted ways). Having Carri with me helped to take my focus off the crap. The weather was actually pretty great. Cold at the start, but perfect once you got moving. I had an amazing cheering section and felt pretty great until about mile 15. At mile 15 I remember feeling like I wanted a walking break but tried not to because well, I still had over 11 miles left! So, I pressed on. Then at some point there was a crazy hill. And I gave in and took a quick walk break. From then until about mile 18 I did okay. I had some really great support at this point in the race from my friends at church! My friend, Heidi, had some of my fellow church members take pics and then she sent them to me while I was running! It was so awesome!
Around mile 18 I was starting to feel some knee pain but figured it was no big deal and kept going. I did have J bring me some pain reliever because I knew I still had a ways to go. Well, by mile 20, I was a mess. My knee was killing me and I was bawling. I didn't think I was going to be able to finish, could barely walk or run and figured out that at my current pace I had over an hour left of running. I honestly couldn't tell you much about where I was or what it was like, or crowd support or anything really except that at mile 20 I thought I was going to die. Then, I saw my fam, and my sis (who had finished her race) ran up to me and talked to me and was encouraging me to do my best and I lost it. Then, I saw the best sign of my entire race.
Jason made many, many, many amazing signs, but I am glad he saved this one for mile 20 or 21 or whatever it was.
I am not quite sure how I managed the last six point two. At some point the wind picked up and I remember thinking, "seriously? wind?" There was still so much crowd support which helped immensely but I was still in quite a bit of pain. I had to run until it was unbearable and then walk until I could run again. I was never so happy as I was when I saw the 26 mile marker! Finishing the race was bittersweet. I was so happy to be finished and pretty proud of myself for making it, but I knew I did not make my time goal. I promised myself I would not have any kind of time goal, but well, in the back of my mind I did have a time I wanted to beat. Another BIG MISTAKE haha!
My medal says, "my first marathon" on it and I love it!
In conclusion, I hate Route 66. I will not run it again. EVER. I am going to run another full though. In October. I started looking about a day after Route 66. What can I say? I am a running weirdo!
Here are a few additional photos!
|cookies from my friend and training partner, Megan|
|pre race photo|
|part of my amazing cheer team|
|my amazing sister and running partner before we started|
|hubby and girls before the race!|
I would like to add that if I can do it, anyone can. For real. I never never never thought I would be a runner. Even Jason said I was the least likely person to run a marathon! I would also like to add that I would NEVER recommend that Route 66 be your first marathon. hahaha