May 17 th

Yes another trip to the doctor tonight. Neela had been doing very well the last few days since her febrile seizure and fevers. This evening Bart noticed lots of swelling under and around her right ear... LOTs more than before. It was hot, streaky and hard as a rock. She would wince when we touched it. Got back on the phone with her ENT doc from Ia City. He stated that she needed to be seen to have it be evaluated since it is probably an infection... (really nothing new). So went up to West Union this evening... left at 7 pm... waited for about two hours to be seen. Finally got in and it was a PA that looked at her... he began to say, "Now just in the last few days this large area in her neck has gotten this big?" (Ughh.. here we go again) AWARENESS... AWARENESS... needs to be put in full force with this healthcare world. I began to show him her records from this past weekend and told him exactly what it was.. a Lymphatic Malformation. He began to state the words a few times so I think he got the birth defect down. :) I told him, "You should go and read up on it, it would be very interesting to you I think. " Don't think he was very happy 'bout that. Oh well... my main goal is to let every doctor, PA, nurse or stranger know what this rare birth defect is. :) Neela got some more antibiotics.. and yes another antibiotic shot to get this cleared up. So in the last few days Neela has had two catheter urines, three venipuncture lab draws, a chest xray and two shots of Rocephin in her ever so sore thighs. She is such a trooper and just is along for this busy and chaotic part of her life. We love her smile, and two sweet precious teeth on the bottom. :) She is an inspiration to us... just deal with this and move on... She is gonna change a lot of lives in just living her own. Bart and I are starting to grow a bit weary and tired with these past few days... we just keep looking at eachother and say, "This could be so much worse... we can do this." Bart and I have become stronger in our marriage and with our relationship with the rest of our kids. We are looking at life differently these past few days... we are NOT sweating the small stuff anymore... well at least I'm not... Bart has always been strong enough to deal with all of this... but like I said, we both are getting to a point where we are actually feeling like we could "sink" in all of this. Please continue to pray for strength and encouragement these next few weeks for "our family" ... with her injections approaching in the next few weeks... we need prayer for her to be healthy on June 1.. or the docs will push them back, since they need her to be completely illness free. We start preop stuff this week...wish us luck.. and also pray that things maybe... kinda slow down a bit... We are holding on... but our fingers are turning white from of the "fast" pace... Faith in God alone is gonna get 'our family' through Neela's start to this journey. God Bless... oh and also please pray no more posts 'til June 1... (in other words no more doc visits 'til then ) :) :)