Oh wow!!!! The day is almost ever, and I must say it was a highly stressful day. I had an appointment for 9 o'clock this morning and I had asked the nurse from last night if she could get someone to wake me up in the morning because I don't have an alarm clock here (mental note: get an alarm clock from home!!!). Well, it didn't happen. At 10 o'clock John woke me up very suddenly with news that it was 10 o'clock. I was very upset. The new nurse had no idea. Anyway, I rushed over to the VG and waited three hours to finally see someone. I didn't care if it took all week, I was going to see someone. The appointment was initially booked for May. Well, we have no idea where we'll be in May or what we'll be doing, so I was kind of both scared and relieved that it was going to be today. I have been having some trouble with my thyroid since late November and today I found out why. I have been diagnosed with Graves disease. YEAH!!!! I'm okay. It just basically means that my thyroid is unstable right now and by taking medicine it should slow down the amount of hormone being expressed from my thyroid. I am glad that we got this taken care of now and not have a problem with my health when we get to Italy or Maryland. Mama's gotta take care of herself too!
Other than that I'd say it was an okay day. That really did mess our day up, and on top of that we're still suffering from the time change. I find it's so difficult to stay with the same schedule when we spring ahead. It always seems to make me just so tired.
Tomorrow will be a very long day for us. Katlyn will need to get an IV put in so that she can get some IVIG(a solution of globulins that contain antibodies that are usually found in human blood, except in immune compromised Katlyn. The IVIG will help to elevate Katlyn's platelet count and protect her a little bit.) I find IVIG days are just so chaotic, but she will get the IV taken out just as soon as the solution is done (it usually takes 6-10 hours). I guess the most challenging thing really is getting the IV in place. We also have to monitor her very closely. Because it's a blood product she could have a reaction to it. The only thing that has happened so far was that her blood pressure was low.
I found a Dora blanket for Katlyn today at Wal-Mart today. She is going to love it. I can just see her now giving her kisses all the time. What a cutey!!!!
Our friends that we met since we've been here found a bone-marrow for their son Cole. They just need to do some DNA testing to make sure that his deficiency is what it seems and not something else. Cole has been diagnosed with a different type of SCID than Katlyn, and a bone marrow transplant is the best option for him. I am so excited for them. I can see us all being real good friends for a long time to come. I am really going to miss them when they leave.
Other than that I'd say it was an okay day. That really did mess our day up, and on top of that we're still suffering from the time change. I find it's so difficult to stay with the same schedule when we spring ahead. It always seems to make me just so tired.
Tomorrow will be a very long day for us. Katlyn will need to get an IV put in so that she can get some IVIG(a solution of globulins that contain antibodies that are usually found in human blood, except in immune compromised Katlyn. The IVIG will help to elevate Katlyn's platelet count and protect her a little bit.) I find IVIG days are just so chaotic, but she will get the IV taken out just as soon as the solution is done (it usually takes 6-10 hours). I guess the most challenging thing really is getting the IV in place. We also have to monitor her very closely. Because it's a blood product she could have a reaction to it. The only thing that has happened so far was that her blood pressure was low.
I found a Dora blanket for Katlyn today at Wal-Mart today. She is going to love it. I can just see her now giving her kisses all the time. What a cutey!!!!
Our friends that we met since we've been here found a bone-marrow for their son Cole. They just need to do some DNA testing to make sure that his deficiency is what it seems and not something else. Cole has been diagnosed with a different type of SCID than Katlyn, and a bone marrow transplant is the best option for him. I am so excited for them. I can see us all being real good friends for a long time to come. I am really going to miss them when they leave.
