This is gonna be a long one

I will start off with the good stuff.  Both Janessa and Isaiah started school last week.  Janessa was so excited b/c she is now in the upper school where she has a locker and switches classes.  She is so so grown up it's unbelievable.  Isaiah was not so thrilled. I think he thought he was done with school having a few weeks off and all.  He pretty much had a horrible couple of days last week, although you would not know it by the photo :) (he never misses a chance to smile for the camera).  Avery started kindergarten yesterday and I have to say that is was the best decision to date that I have ever made for him.  I honestly never thought that I would have the courage to send him to school but I did.  And he loved every minute of it.  The kid could not stop smiling with that toothless grin of his and on the bus ride.  He was so happy to see the kids and they loved seeing him even though they had a ton of questions. 

So as you can see, school is a great thing for the kids :)

Onto the crazy stuff:

Let me start off my saying that my birthday weekend was tough, not only was I stuck in the house most of the weekend but see Isaiah basically be out of commission the entire weekend was difficult. His migraines are constantly changing.  He prefers to be really bad when I don't have a nurse. Over the past couple of months he has only be cycling on Sunday's but of course since I was there with he decided to cycle both Sat. and Sun.  Poor kid.  I am totally convinced at this point that there will never be a cure for him.  We have tried everything there is to try.  This is just going to be his cross to bear and it really stinks for him.  I guess my only solice is when he is better he is back to his crazy wild man self and pretty much a healthy kid.  It just makes me really sad that he has to go through this so often :(

Onto the trouble maker :)  So last time I posted he was have some bleeding issues and very low blood sugars. I don't have an answer about the blood sugars b/c they have been great lately.  But I do know why he was bleeding.  He had gotten a few vaccines the week before for school.  News to me and the pediatrician is that his weekly IVIG infusions cover him for his vaccines so he does not need them.  So he apparently had a very bad reaction to the vaxes he had gottent the week before.  On Friday he was due for two more (live viruses) and Thank God the nurse started asking a ton of questions beforehand.  I let her know he was immune deficient and she was immediately alarmed.  She paged Avery's immunologist who confirmed that Avery is NOT to get any vaxes.  EEKK...So So glad she caught this b/c it would NOT have been good if he would have gotten these shots.  I am so relieved.  He got a letter stating he was not a candidate for the rest of his vaxes b/c of his IVIG infusions.  I feel better at least that there was a reason for his bleeding.  It would have been difficult not knowing.

So that crisis was resolved and onto the next one......Today we had an appt with a physiatrist to look at Avery's curvature in his spine.  This guy is very difficult to get into and usually books out 8 months for new patients .  Isaiah had recently seen him so I was able to get a sooner appt. for Avery.  Well, it did not go how I wanted it.  I mean I knew his curve was really bad but not as bad as the dr. thought.  Basically it comes down to him either getting spinal surgery for quality of life (being able to sit comfortably in his chair or dying a very slow horrible death from all that comes with your back being so curved such as Congestive Heart failure and many more issues.  While it is a very very scary decision b/c I feel like I am pulling a trigger, I have to do what is best for Avery.  So I have made an appt with the top dr. who luckily happens to be at Children's Hospital for this procedure. 

This past 6-8 weeks have been really tough emotionally on me.  I feel like one crisis is resolved and then a worse one is to follow.  None of these decisions are easy at all.  I would have never thought I would have to make these decisions for my 5yr. old little boy.  It is so so tough.  Sometimes I just feel like I am going through the motions of how everyone expects me to be with a smile on my face and going to work and trying to live life when all the while I am dying inside with each decision I have to make.   But then just as I feel like I cannot do it anymore, I have tears of joy as I see that toothless grin on Avery's face riding that school bus or Isaiah cracking up laughing to Spongebob.  It makes it all worth it in the end.  Just wish I could take all their pain away. 

So there you have it.  I was hoping for a very upbeat post but it didn't happen so hopefully the pictures put a smile on your face.  How could they not....