Well when they come, they come...follow-up doctors appointments that is. On Wednesday, Ian got to see his cardiologists...and believe it or not, this MD has nothing to do with the VKR1 mutation. At this point, there is no indication that SMA and cardiac issues are related...part of me feels this is not possible however, with the little bit that is known about VRK1 and SMA...it is what it is. You have to go with the information you at hand and make the best decisions you can with that information. So why does he see a cardiologists...a heart murmur.... ECHO and EKG done, all looked good, no changes from last year. Ian's blood pressure was elevated but that is actually normal when he is seeing MD's, after a little bit, they rechecked it again and it was down. The kicker with this MD appointment is that when all was said and done, it was time to leave...at 1:15pm when the appointment was at 9:30, but no they could not leave...Ian HAD to see pictures of this heart. So we hold steady where we are and go back in a year.
On Thursday, we had two appointments, one with the GI MD and the other with Pulmonary. Ian's GI appointment went well. He has been off of his steroids for about 2 months as well as off the extra supplements thru his g-tube for about 2.5 months, he has maintained his weight. Although we were hoping he would lose some weight we will take the fact that he has not gained anything as a good thing. Dr. K changed the multi--vitamins he is taking to give him some more minerals. Per his 3-day food journal, his only getting about 800 calories, for most that is not healthy but it appears for Ian it is. So we hold steady where we are and go back in 2 months to monitor his weight.
Pulmonary went well...as with his other 2 appointments, Ian is holding his own. We were not able to get his CO2 level as the machine was not working correctly. Dr. M felt okay checking his O2 level, which we check at home as well...it was 98 while we were there. He ordered a sleep study which will help to determine if his vent settings need to be changed and give him a "tune-up". He took a mucus sample just to make sure all is good...and will let us know if anything is brewing. Besides that and going back to see him in 3 months all is good. To end the appointment Ian got to see some of his xrays which were in the system of his lungs and spine. Inquiring Ian's want to know...
So Ian is holding his own, continuing to give us joy and happiness just as is Becca.
Remember....treasure yesterday, dream of tomorrow but live for today.