It has been a long time since I’ve sat down to write here.
Sophia is now 20 months old! Wow, time flies!
Lets do a rundown of her medical diagnosis’ and where she stands
FPIES- August 2013 marked 1 year without a severe FPIES episode therefore they have considered her to have outgrown it! YAY!
Linear Growth Deceleration/Failure to Thrive: Since moving to a toddler formula (Elecare Jr) and upping her calorie/oz intake she is GROWING! Yay! She’s still tiny but she is finally growing. Which means her body is getting what it needs from the formula!
Rickets: her arms are doing well, her legs still show bowing. Actually she is set to go back to PT to see if they want corrective shoes/braces but really, she’s doing well considering! She’s walking, running and climbing!
Hypogammaglobulinemia: Still struggling with her immune system. Her numbers still aren’t anywhere close to normal and she’s still highly prone to infections especially if she has a tummy upset which causes her intestines to not filter out as much as it’s supposed to. She also isn’t responding to vaccinations so we stopped them, she had bad reactions to them anyway. No doctor has disagreed with that!
Reflux: no herein lies the difficulty. She supposedly has GERD…BUT they are ordering upper and lower scopes with multiple biopsies to check for EoE because at this point they finally agree that her being on all those meds with no relief means something else is at play. Plus if she’s outgrown FPIES, she should be able to eat and she isn’t.
Foods: She was doing REALLY well for a while. In fact I let my guard down and felt NORMAL! Now she’s taken 14 steps backward and is on 95% formula again. She needs to grow so we do what we need to do. They don’t want us to take her bottle away until she’s down to 30 or 40% formula so it ensures she gets the right amount (apparently kids drink more from bottles than cups). She wants to eat and drink what her siblings are, so that’s really hard right now. She’s at an age where she doesn’t understand!
With her scopes coming up we have to put her back on the PPI (which they think caused the rickets in the first place) for 6 weeks (which the PPI does nothing but it’s necessary to diagnose EoE) and we have to intentionally make her sick. But once we get a diagnosis, there are meds she can be on. It’s when they start taking about her struggling with this the rest of her life and words like remission that make me cry. Do I hope that it’s EoE? NO! But do I want answers after 20 long months of no answers? YES!
For now I am just watching my spunky, sassy toddler enjoy life and try to make it as safe and fun for her as possible.
