Some news

Big breath. Some results are back from Macsen's MRI. The Gi dr who ordered it is out of the country so I had to keep calling her office and bugging them to get someone else to give us some news. Her partner was extremely hesitant to give me any info - saying there were some abnormalities but neurology is just not her specialty and she was afraid to say something wrong. Call neurology and make an appointment so you can hear what they found. ?!!! Neurology message said expect to wait 12 weeks.!!!?! Texted his pediatrician who received a copy and read it said "possible Arnold chiari malformation and low lying cerebellar tonsils." If you are at all like me you probably know very little about these and went immediately to Google. It's an abnormality that forces part of the brain into the spinal cavity, sometimes blocking fluid, causing chronic headaches and other complications. We are floored that Macsen's little body may have yet another rare diagnosis. It is almost more than I can bear at the moment so I am doing my best not to dwell on it or the implications to Macsen and our family. If he does have it then we will deal with it as well as we can. It means more visits to specialists and probably a different type of MRI just to determine if he does have it. Macsen is suffering from chronic headaches which wake him - crying, eyes closed, little finger stabbing at the side of his head. Several times at night and during the day. I was so hoping they were caused by his anemia and once we got that resolved he would get some relief. 

In the next 2 weeks we have another trip to Atlanta for his ear tube surgery which is still on as of now and another trip to Pensacola to see the hematologist. Not super thrilled about that one bc after realizing Macsen couldn't  take the ferrous sulphate (he would vomit) the dr prescribed a tablet... For a 1 year old... Who doesn't swallow solids and you want him to swallow an iron pill? Hmmmm. I have very little patience lately for drs that don't listen, are unwilling to step out of their comfort zone and try to find solutions for Macsen. I know they exist and it is my job to find them. For now he is taking the iron supplement I buy at the health food store and we will see how well his levels have come up when we do blood tests before that hematology appointment. I refuse to do iv iron infusion on him unless his life depends on it. I think the process would traumatize him and ruin his already troublesome veins.

Today I am praying he doesn't have chiari. We are stretched so thin these days and were hoping the Fall would bring us some answers, solutions for his inability to eat, and relief from the constant traveling and specialists.  We are extremely grateful to have our little guy with us, so many children have been lost this summer to chds, that I hate to complain about the cost of having him here. But some prayers for strength would be greatly appreciated. Thank you to my friends who text to check on us, bring us dinner, pray for us daily. Your continued kindness and thoughtfulness bolster us when everything seems impossibly hard