To post, or not to post.....

See this cute little being right there? It is so hard for me to imagine that she isn't the most perfect creation ever (besides her brother :)). I have been avoiding my blog lately because I have only had her on my mind and I wasn't sure if I was ready to put it out there yet. I debated keeping this to ourselves, because we feel as though this is our never ending saga of illnesses, but I knew there were too many people out there who have traveled this winding road with us and our children and the more help and prayers we could get, the better.

To make this as understandable as possible I will leave out a lot of medical terminology and details just so you can get the big picture. I have posted multiple times about Cohen's thyroid disorder and small size ever since she was diagnosed. We went for a regular check up with her endocrinologist last week to check her thyroid levels --which were great and have been regulated since MAY!-- and developmental milestones. She has gradually been gaining weight however she has not grown in length at all in 4 months (she is 25 in long). I always say she is small due to her hypo-T, however I was corrected by the dr who explained it very well to me. Cohen DOES have hypo-T BUT she is regulated, therefore she is just like any other baby out there. That is where the concern comes in....she has been regulated now for 4.5 months and has fallen farther off the growth curve, instead of gaining or at least maintaining. This combined with the verbal/speech delays are huge concerns as she approaches her first birthday next month. Dr Bastian feels as though the hypo-T might be secondary to something bigger going on.
So here is the plan of action-- Cohen will have a sedated MRI Oct 9 (rule out obvious malformations, tumors, etc), follow up with endo Oct 21 for results, and then meet with a genetisist Oct 30 to hopefully put all these pieces together.
I do not know what any of this means, I have tried to just be positive and know that they are being cautious. But I am constantly reminding myself to be thankful, I have so much to be thankful for. I am thankful that we have drs who listen and are proactive in Cohen's care. I am thankful that there is only 1 pediatric endocrinolgist in that area and Cohen was seen within 4 weeks and there is only 1 pediatric genetisist in the whole state and Cohen got an appt next month. I am thankful for listening to my gut and being persistent with Dr Flowers that Cohen's tongue wasn't normal, thankful he listened! Thankful for how far she has come!

If you made it this far, you deserve a gold star!! But I do want to end on a positive note and tell yall all her new tricks. She is cruising everywhere, on all the furniture, and has even attempted her push toys! Physically she is right on target. She learned one hard syllable--duh! This is HUGE!! She started sometime the week before last and it was very rare but lately it has become more frequent. Sunday morning I woke up to her "aahing/oohing" on the monitors, again this was a big deal because this is unprompted "speech" vs one of us stimulating her to talk. We know she is continuing to improve and we just can't get enough of that cute little girl!