A visual of the problem- the only red dot above the lines is her height- nothing else even hits the bottom line which is 5th percentile. The top charts are length for age then weight for age. The bottom charts are head circumference for age then weight for length.
It doesn't end, it really really doesn't. The Lord promises he will not give me more than I can handle and I am going to trust him on this one. Anna is losing weight again. We have tried everything we know how to do and it just isn't getting any better. She has lost 2 lbs in a month. 2 lbs on me is nothing, 2 lbs on her is huge!! I knew she had not been eating much and was taking less and less milk. The other day I was changing her clothes and really realized how much more her ribs and spine were sticking out. My heart sank. We did not own any scales but I knew if it was enough for me to notice then it was too much. I called and spoke with the GI's office. Once again, they were wonderful and took my concerns as seriously as I did. We have an appointment on Thursday and then Anna is scheduled for and EGD and manometry on September 15th. Basically, she is having a scope placed in her mouth down into her esophagus and stomach to check for problems and reflux, etc. This might also tell us if her swallowing is a problem due to her high muscle tone. I am praying for answers. The answer is likely going to be that Anna will need a feeding tube (G tube). Kenneth and I have discussed it and feel that at this point it might be the best option. Anna would still be able to eat whatever she wants but then during the night we could hook her up to a feeding pump and feed her continuously through the night. That way she would get all of her calories whether she ate that day or not. It is not an easy decision but hopefully if that is the route we end up going it will only be temporary until her muscles either relax a bit or she learns to better control them. I did go and buy some scales and was is disbelief at how much she had lost. She will be going to Dr Ogunmola's office now every other week for weight checks also. It isn't just about being skinny. She is truly malnourished and her learning and ability to try and "catch up" is altered by this also. I think I am ok with it as much as I can be. I know I have to do what is best for her to give her the best chance to grow and catch up. I have spoken with many other parents who reluctantly went with the tube as well and all have had fantastic results and say they would do it over again in a heartbeat. They all say their child/grandchild has really benefited and that the complications have been minimal. Please pray for us this week that we will be accepting of whatever it is we need to do and pray for Dr Ogunmola that he will know the right thing to recommend.