BAXTER FAMILY UPDATE

We have had so much happen in the last week I thought I would just include all of our updates in one post rather than separate ones.

1) CERT - we didnt get picked for the coordinator position. My only thought is that I flubbed something big time - or they picked someone that probably has minimal to no outside responsibilities and has tons of time to take on this very time consuming, challenging position. Even though we didnt get chosen, we both feel that must be for the best and we will just move on to other things now. We did our best and that was what we could do.

2) Urology Specialist Appt - I went in to see my new doctor last week. I was a bit nervous as I had been told the dr was not the nicest person in the world to work with. I was more hopeful when a cute, bubbly nurse came and got me and did all my pre-appt stuff. I was even more hopeful when a very friendly PA came in and said she would be helping with my appt and anything in the future. She asked very good questions and really listened to what I said. She was floored when I showed her my stones - thinking my regular doctor would have done something with them (not). She took them for analysis to see if they confirmed same consistency of previous stones. When the doctor finally came in we talked for all of 2 minutes. I would say that she has a "conservative" personality - not so talkative, but what she did say she made good points and got across what they were willing to do for me. She was very surprised/concerned that knowing the contents of previous stones that I had not been put on stone preventing meds way before now. She prescibed starting over completely with new tests (all the yucky stuff again). She was not willing to jump right to the conclusion of surgery right away either, which surprised me. She wants a whole pict from all the lab stuff first and then we will discuss my options at my next appt in a couple of weeks.
I had a rough day before the appt and hadnt eaten much of anything before going - not knowing that part of my appt would be a blood draw. I was a bit freaked while waiting in the lab. I have only EVER had one lab tech who could get me on a first try without making me a pin cushion or black and blue from the needles. I warned the lab tech how difficult I usually am and I am sure my nerves didnt help or the fact that it was as cold as a meat locker in the lab area (I was so cold I was shaking/teeth chattering). The lab tech finally came to get me for my turn. He pulled out all the tricks - extra hot washcloths, peds butterfly needle and a ball to squeeze. I also lay back in the chair with my feet braced on the floor since I was already not feeling well. Better to brace up than fall out of the chair completely. I was pleasantly surprised that the tech actually got me in the first try (which I was thankful for when I heard the other tech miss several times on another patient - glad I didnt get her - ouch). Even though my tech got me on a first try he said it was really good that he didnt need to take more than the little bit he got - I am a slow bleeder too and he said he would have had to poke me again if he had different tests to run....thank goodness for me. I must have looked pretty pale and been a concern because the lab tech got me finished up and then went and got me some juice and told me to stay put. I slowly drank the juice and the tech made sure I was sturdy before he let me go. I was glad to get out of there - but nice to know that with all the new doctors that I can request another lab tech in the new lab.
I have a couple more labs to do and we are pretty much in holding pattern again until my next appt.

3) Kids' Doctor Appts - Kels, Colton and Ceana all had well child check ups this week. We love our peds office doctor and staff and they always do a great job with the kids. We were surprised to find that Kels only weighs 21 pounds - she is such a chunker everyone groans when they pick her up (and compares that Ky is way easier to pick up/carry even though he is older). We did find out that she is 29" long though - which would explain why she is wearing 18 month clothes for only being 9 months. Our doctor was thrilled with all the stuff she is doing and wasnt really surprised knowing she is in a house with so many older siblings. He was amazed at all the things she is eating, and didnt seem concerned at all that she is eating foods that have been 1 year+ foods. She didnt have to get any immunizations this time - but will get all the big ones at her 1 year appt. Our doctor warned us before hand and told us to be sure not to bring her in on her actual birthday since those shots will prob make her very sad. Not fun to look forward to - but so important. At least we know before so we can be ready.
Colton had a pretty good check up and only had a couple of concerns we will keep an eye on. His ruptured eardrums are healing which is good. He really struggled with the fine motor skills exercises though - which is consistent with what his teacher is seeing in class. We discussed his options and our doctor made it very clear he would help us get extra help for colton if he cant get it at school. His specialists at school were all ready to cut him loose in November which I convinced them was not a good idea because of fine motor stuff. Our doctor completely agreed and was even willing to write a letter to the school or help us get private help for colton if needed. It was interesting to me as I watch colton try to do the exercises our doctor uses for testing (standing on tip toes, squatting down, walking on his heels) - these are all things I thought were large motor - come to find out these are all fine motor skills - using tiny muscles in the feet/legs - which is why colton couldnt do them well or at all. I learned something new - even after all the stuff we have been through with colton. Our doctor suggested several things to help colton - some of which included things we are already doing - letting him cut, color, do puzzles, etc to try to strengthen his muscles. He also recommended getting some mini bathroom cups and have colton stack them in a tower multiple times in a row and also as fast as he can - watching him for muscle fatigue and to help him build more endurance. He also said baking is a great way to strenthen muscles - kneading bread dough or cutting out cookies with a cookie cutter can really help. Guess that will give me extra incentive to get some homemade bread and cookies made soon and on a more frequent basis.
Colton's big excitement from the appt was to tell everyone, several times, that he was SIX! He was also very impressed with himself for being able to give a potty sample and was not at all shy about telling all the nurses and our doctor that he "peed in a cup". I think he thought that was a very unusual request - which I guess it is - but was very proud of himself.
Ceana's check up also went well. She is very tall for her age and was told she is still growing! She also got perfect results for eye/hearing. Our doctor teased her that he was jealous she is so perfect in all these areas. She & our doctor also talked a bit about emotional stability and challenges of being a teenager. Our doctor is so kind and he does a great job with all of my kiddos, no matter what age they are. She left feeling like the appt went well (she goes by herself without me now) and that she was comfortable with our doctor/nurse.
Overall the kids' appts went really well and we wont have any more dr appts until May.

4) Allergy Specialist Appt - I was a bit nervous going into this appt too - with the way my body reacts to things I wasnt sure what they would/could do for me to test things. I pretty much stumped the nurse and doctor in that office too. The only thing I came away with from a very long, 2 hour appt, was results of all the things I am NOT allergic too - and that my fingers are not allergy related at all and all my sensitivities to pain meds/anesthetics was just something that we were going to have to still try to figure out on our own. The only thing I reacted to from the skin tests were my pollen/grass seed allergies - things we already knew. I was given an allergy med prescription and pretty much sent on my way. I feel like it wasnt the best use of my time (and Kaeli got rewarded BIG time for caring for Kels that whole time) and it didnt resolve any of the ??? we were hoping to get answered. So we really are still in the same place we were before the appt - which is nowhere closer to trying to get health things resolved.

I think this should update all of our info for now. I will be sure to post more after the next set of appts and should know by then whether I will be scheduled for surgery or not. For now, we are just waiting around again, trying to be patient.