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!