I was initially planning on posting about feeling so blessed that things have been so good around here.  And they have been but when the boys have a rough day, it slaps you back into reality.  Isaiah has been in a bad migraine cycle since yesterday and "something" is bugging Avery. 

The thing about Isaiah is b/c of all the state cutbacks they wanted to cut his nursing hrs.  I'm just really upset about it.  Isaiah care is often overshadowed by Avery's illnesses.  Therefore, many healthcare professionals do not see him as being "complicated".  This is totally off base.  The reason why Isaiah has only had one inpatient stay in almost 4yrs is b/c of all the nursing care he gets.  The reality is that his migraines have become so much more severe along with his diabetes and many other issues that come about during his cycles.  It is awful to see how much he suffers.  So I let the caseworker know that I am appealing it and I have a pretty good argument.  I think the state just wants them to cutback nursing hrs. as much as they can without the parents fighting.  Well they obviously barked up the wrong tree.  My kids do not get alot of extras simply for being disabled but nursing is something that they deserve and will get what they are due.  Isaiah's quality of life is greatly affected by his migraines so it is easy to get down when you see him suffering so much.  He should be perking up by tomorrow, hopefully.

Avery was been fabulous for the most part.  I have been reluctant to celebrate but will quietly say that it has been a yr. since his last central line infection.  He has only had two line infections of the three yrs of having a central line and last two yrs. of them being with TPN 7days a week.  I am hesitant b/c I certainly don't want to jinx myself but it IS something to celebrate.  He has gained 15lbs in the two yrs. he has been on TPN which is awesome.  He is like a football player :)  Although he had a rough summer his infections have been significantly reduced since starting IVG.  His pain is being managed so much better although he is on enough methadone and valium to kill any one of us, but hey it's working for him.  He loves, loves, loves school.  In fact we finally applied for his Make a Wish and are going to apply for a computer with a switch for him.  Buuutttt, over the last couple of days he has been super fussy.  It is very difficult b/c he cannot tell us what is wrong with him.  It is a complete guessing game.  There really is no other drugs we can give him to alleviate his pain b/c he is on huge doses already.  I know something is bugging him when he whines unless you are right near him and he is up fussing during the night.  It's probably his belly but know real way of knowing. 

So the boys have not had a good couple of days but this too shall pass.  Isaiah will be back to his crazy self by Wed.  and so will Avery.  I am grateful for anytime I get with my boys feeling good.  Just sad that it was Halloween yesterday and the boys did not feel good so it was not worth dressing them.  It brought back the reality that Janessa is our only child that we get enjoyment out of the Holidays.  I'm sure it sounds harsh but it is our reality.  Even if the boys felt good, they would be in bed before trick or treating starts. They are just too tired to stay up that late.  I am grateful that we have her to share the normal with. 

This was supposed to be a positive posting and I think I have some happy stuff in there???Once I start typing it just flows however its going to.  I never review what I post (thus the grammatical errors!!!).  

I will end it on a huge positive, I totally forgot........

So I am a huge Starbucks lover.  I don't even have to put in my order b/c they know what I want already.  Anyway, I was there last wk and the Manager wanted to speak to me????They do a toy drive every yr. and usually give to the same organization but wanted to change it up this yr.  She said the first person she thought of was me and my family. They know Avery spends alot of time at Children's so she wanted to give the toys  to his unit.  I felt so honored and happy.  Avery's home away from home (ICP/MICU) is in need of alot of toys for their child life department.  I immediately contacted them and they were thrilled and it felt good that through Avery in some way other kids will have toys, videos, and games to occupy themselves when they are so sick.  What a great jesture and a great way to end this posting.