Getting Caught up...

Christmas Program:

Seths school, Foundation For the Blind had a christmas program and they did the 15 days of Christmas and Seth was in charge of the lights. He had to hit a switch to make the lights turn on and it was so so cute to watch him hit the switch and turn the lights on all by himself. After the program they had food for everyone and then Santa came so the kiddos could get pictures with him. Seth wasn't in the greatest mood but I made him get one with Santa anyways . 


We had about 3 weeks off for Christmas break and he did get sick once during the break but it wasnt too bad. We had a wonderful Christmas and Seth and the girls got spoiled with their Christmas gifts. 

Neurologist Appt:

We met with Seths new neurologist January 31st and we decided that in about 3 months we would go off the diet. In the meantime we added a new medicine and took one out. The new medicine seems to be helping a little but we still have not gotten onto his full dose yet. We are suppose to increase it each week until he is on 10mg AM and PM right now he is only on 5mg AM and PM. We have really taken our time with the new medicine because he was in the hospital due to RSV and then he just has taken a really long time to recover from it. 


Thursday night after his neurologist appointment we noticed that he was just really congested and struggling to breath so we knew that he was coming down with something and decided to clear him out the best we could and give him some saline. He was up all night coughing but besides that he was doing okay. Friday was the same way but more congested and still up all night coughing. Saturday was a different story. By saturday evening he was retracting quite a bit and really congested. So I decided to take him to phoenix childrens urgent care where they checked him out and took him to the breathing area. They started him with an IV and did a deep suction and then did two breathing treatments and he still was not keeping his oxygen levels up and still retracting so they decided they want him to go to the hospital. So the ambulance came by and took him to PCH while I waited for Mike to bring me my clothes and then I headed down there. When I got there they already had him in a triage room and were doing some suctioning and they did a nasal swab to see what was going on with him and they also had him on quite a bit of oxygen. After about 30mins and a few x-rays the nasal culture came back positive for RSV. The mucus was so think that he just couldn't cough it up and it was so thick in his upper airways that he couldn't breathe through his nose. Finally they got us a room and started him on breathing treatments every 4 hours. 

Seth was in the hospital Feb 2-8th and honestly it was a really long time for me too. Friday when we finally go the okay to go home for the doctor and his pulmonologist we were so excited and Seth was so ready to go home. We now started treatments of albuterol and pulmocort morning and night and they ordered vest therapy as well so we  were just waiting on insurance to see what they would cover and then wait for it to arrive. After being home about a week we got his vest and he absolutely loves it. He laughs everytime he is in it which always makes it so much easier for us to do it because of how much he enjoys it. 

His first day back to school after RSV was valentines day and he got to play on the jiggle table and use his switch. It is his favorite thing. Here is a video of his cute self pressing the switch everytime the table shut off. When he presses it he starts to jiggle again. He is so stinkin cute!

Since RSV Seth has been off and on with some colds and school has just been really hard. He went from loving school to really just having a rough time. I honestly think it is the class size but there is nothing that we can do about that. He has been hitting his head way more than normal. Normally he would do it if he was bored or bugged but now he is doing it all the time even with his favorite things. He had a really good week last week and then he got the stomach bug and was puking all day friday and then sat/sun/mon/tues/wed/thurs we have been dealing with diarrhea. We started him on a probiotic but he is in a tricky situation with the diet he is on and trying to keep his ketones where they should be. Needless to say he has been pretty cranky since Friday but last night (wednesday) we got a full nights sleep which is the first in almost a week.