Ezra News

Well, just two months after the MRI, we finally talked to the doctor about the results. It seems that Ezra has what’s known as "Hydrocephalus" or water on the brain. Its not actually water, but excess spinal fluid. It is fairly common, especially among premature babies. If you click the link, you can read more about it. The doctor stated in his report that the excess fluid could be do to either a faulty ventricle or that Ezra’s body is making too much fluid. The first option is consistent with some of Ezra’s other issues, because it is a connective tissue problem. Both the Neurologist and Geneticist agree that Ezra has some type of connective tissue syndrome, but there are over 200 of them and it will take time to narrow them down. Ezra still needs to put on more weight for further genetic testing. We’re not meeting with the neurologist again until next month, but since he didn’t say anything about a shunt in the report, it could mean that he’s waiting to do a follow up MRI to see if the problem corrects itself. (I guess that can happen in some cases of Hydrocephalus.) I am still researching the diagnosis and all it entails. The doctors don’t seem worried, so I am not going to get anxious about it—yet. It is a scary thought to think of my little baby getting brain surgery though….

Another thing that has come up is that Ezra saw a pulmonologist this week who believes that he is working too hard to breathe and that he is saturating too low of oxygen levels. She thinks this could be contributing to his delay in growth and development. There is no course of action at present, but oxygen support might be recommended. Now this I am very scared about. Having flammable oxygen in my home with the kids and everything. No more burning candles for me I guess….

And, so, we press on. This is a lot to take in, along with the upcoming G-tube surgery, but we have to do what we have to do. All I can say is that this little man has an incredible will to live. He has had to face so many challenges in his short life. And he has overcome so much!!! Yet, he smiles and plays and coos and takes it all in stride. He’s an amazing child. God has a greater purpose here; we are absolutely sure of it. Please keep the little man in your prayers and us too.