Brrr.....

It has been freezing cold out the last few days!!! Today I drove to GR with Mallie on crappy roads at 7:30am. We had 3 appts today so I did not want to cancel. Once we were out of Mason County the sun came out but still icy/snowy the whole way. We made it to Grand Rapids at a little after 10am. Not bad considering 40-45 MPH was the speed most of the way. I got 20 MPG too - that is amazing!! Oh the little things, right? Ok so backing up a bit here. We had our sleep study with Mallie a few weeks ago - that was good times. Mallie did so well while they hooked her up to all the wires. There were a bazillion of them, Ok so maybe not but there were a lot. The only thing she did not do well with was the nose/mouth portion she had to wear to track her breathing while she slept. After she finally fell asleep around 10 pm I tried to sleep too. The person monitoring her for the night was really sweet but really they need to actually experience this to truly understand. So every so often she had to come in and flush the the lines to the nose/mouth piece due to saliva clogging it. In normal settings this would not wake up a sleeping person because she does not have to touch the patient, right? Well every time she came into the room she flung the door open as wide as can be to allow the bright light of the hallway to shine in both of our eyes. Now I could hear them come in too, Mallie not so much (for obvious reasons). I just don't understand why they can't keep the lights down - they woke her up once for sure - maybe a second time but she fell right back asleep. This went on all night til they woke us up at 6:30am. Plus they can't tell you anything before you leave. See pic below of her wires.

The study was Sunday night and we had an appt with Pulmonology Thursday - normally Pulm would have scheduled sleep study and this would have happened later than planned. But ENT Afman's office had the study done so we could get moving on her Tonsils/Adenoids. Of course the results were not back when we saw Pulmonology so it was a nice visit. They agreed Tonsils were big and that the sleep study would probably confirm. So another week went by and the results came in. Had to schedule appt with ENT to talk about surgery date/options. Got in the very next day - also so they could officially tell us the results of sleep study. She has SEVERE OBSTRUCTIVE Sleep APNEA. OH Great - now I can't sleep at night knowing she stops breathing an ave of 3 times an hour. I guess I did not think she had it or had it bad because she never snored. Well to me she does not sound like she is snoring. But she has always been restless sleeper and the big one is she sleeps with her mouth open at night. So in hopes that the problem is TONSIL/ADENOIDS - we are getting them out on March 4th. FOREVER AWAY!!! Also hoping this will take care of the chronic fluid she has in her ears. Adenoids play a huge role in all this - and everything is connected somehow. After this is completed - we will have to do a follow up sleep study so that we can make sure it fixed the problem. Without a full nights rest and of course being able to breathe a whole night and not cut oxygen from her growing body. It all plays a role in her growth too! Maybe a fix all??? I am very optimistic :) They have to do a certain type of surgery too because of her implants. I forget the name but one way throws a electric current thru the whole body and one does not. They are doing the one that does not so it does not mess with her CI's. Her CI doc has approved and the tubes will go back in during this surgery too. So that brings us up to till today with her appts - we had to get a Pre surgical EKG and some blood work. We were already going to be down there today for her last Mary Free Bed appt for getting her walker ordered. Then we saw the Pediatric Orthopedic doctor. Long drive - but the EKG took a hair longer to set up then it did to run it. Literally took a minute for the whole thing. She did great while they stuck leads all over her. Check that off list, then off to get the dreaded blood draw. OMG - she did amazing there too. They took a ton of blood and she never cried or whined or anything. I was so proud and amazed! She got a strawberry shortcake sticker that smelled like strawberries and a pink fish for being a big brave girl. Sad maybe but those daily growth hormone shots must have primed her for that. After that and some lunch of French fries and ketchup - (her fav) we headed over to Mary Free Bed for her final eval for her very own walker. She did awesome today in the walker. She has been wearing her AFO's (leg braces) lots more so I think that is helping. Thanks to Elaine Buskirk - I have never been more happy or thought that someone should be in our lives right now. Mallie eats at her house and drinks her special milk. Apparently does not need a laxative while at Lanie's either :) Finally took the braces there for her to put on her and she lets her put em on and wears em all day. She fought me a bit before that. It only took a day or two at Daycare and BAM - she is fine with them. So Elaine if your reading this, thank you thank you thank you!!! The ortho appt was ok - basically they took some xrays and said keep doing what your doing. At least the xrays looked good and there were no issues, right? We go back for a follow up in 6 months. The next appt in GR is her surgery so we pray she stays healthy with no colds or sicknesses by then :) The surgery we will stay overnite and be home next day. Her words are still coming along good - struggling with the P and B sounds. Still trying to get her lips together for those. She does M good with or without the lips, haha!! I know it will come - she is one smart cookie. I am posting the link to her video in her walker today - hope it works!