Just thought I would let you know that Elijah's temp is back up. I will still rejoice in his one day of fever free status. But, no one is talking discharge around here..and so I think they have a much better perspective of the up and down nature of things in the BMT unit.
He has had a rough day..there are just too many people coming in all the time. It is overwhelming for any body, let alone a child...with autism. He is feeling out of control of his world and the sensory overload of all the different stimulation that he has no control over has been really getting to him these last days.
We are working on developing a schedule for him so that he has a little more predictability in his day. But with so many different people in here from all different departments..the task is huge. I wasn't sure I wanted to take it on..but since he has a fever again and I am not dreaming of discharge anytime soon, I might as well take on the task. So, off I go...
Tuesday, September 13, 2011
This extreme parenting we have been called to can be a lonely and often maddening journey. And there are times when the road seems particularly treacherous..like adolescence, or times of alienation when family and friends silently fade away..because of lack of understanding that FASD. Parents are often reeling from the diagnosis and are dealing with the hurts they have endured by those who have told them there child was fine and implied that they were problem..not the permanent brain damage caused by alcohol.
When parents find themselves entering on the on-ramp of this road, they are often confused, overwhelmed and lost without a GPS available...in need of help. Sometimes the GPS they have been given, by another parent, a book, or a doctor, seems to be leading them in the wrong direction and what they are hearing from the voice in the car doesn't meet up with what they are seeing right before their eyes on the road they are traveling on. The mixed messages get so overwhelming that many parents find themselves throwing the whole GPS out the window in an attempt to find their own way.
Everyone else seems to be speeding by them as they attempt to merge into the traffic that has now become their life. If parents don't look in the right places for the support they desperately need, it is like a frustrating attempt to merge onto this new road when everyone else seems to be unable to see you as you attempt to enter their lane. Worse yet, some see you and speed ahead..not allowing you in.
And then there is that person who sees you...they make eye contact...they slow down to let you in..and smile. You feel a calm warmth from that person who isn't so absorbed in their own needs that they have room in their world to acknowledge you. Those are the people that make support groups worth attending.
Having been on the road awhile, I have made connections with those that I consider my support group. My closest friendships have grown from support groups of all types. Many of you, though we have never met, share this roadway with me (I am the old, gray car with all sorts of dents in it!) You have slowed down and let me merge...and hopefully I have done the same for you. I have found such support in this virtual world. I no longer feel like I "should" attempt another support group...I find my support here and I hope that I am able to give support as well in this format.
And one of the MANY blessings that God has given me during our hospital stay is the opportunity to meet with my fellow bloggers and amazing friends (Dorothy and Barb) for a late night rendezvous here at in Elijah's hospital room. We all attend the same Church but have only actually sat down in person a handful of times together..with 26 kids (at least 10 with FASD diagnoses) we just don't find the time. So, for the last few weeks at the hospital, after Elijah is sound asleep, my friends tuck their kids in bed, grab chocolate and come on up to the hospital. We talk about tough stuff, we listen and share our joys and struggles and we laugh so hard we can barely stop. I look forward to their weekly visits like you would not believe...We don't get much sleep on the evenings we get together...but I smile every time I yawn the next day!
I only wish that we could include all of you in our madness...you would be blessed as well..while we can't have all of you with us...we will certainly do our best to eat some chocolate for you.
at 12:08 PM
Elijah's fever has definitely taken a downward turn...slowly but surely. That is so encouraging! It seems like the adenovirus that was found in his blood, urine and stool is responding well to the medications they are using. This is the med (Sidovofir) that can be hard on the kidneys. Some of his labs relating to the kidneys (creatinine and urea nitrogen) are above normal values, but not off the charts by any means. His labs are looking really good. His platelets (31) and hemoglobin (10.1) are holding their own without need for transfusions in about 5 days! He is doing really well. Some lab results are still pending but if they come back looking good, then I would think we would be on getting a visit from the discharge coordinator again. And the always tentative planning can begin...maybe Monday?
God and His people have been showering us with his grace and provision for all of our needs during these past 8 weeks in the hospital. We are greatly blessed.
Hopekids...one of our favorite organizations had their annual Hopekids festival right here at the University of Minnesota campus on Sunday. I was able to sneak away to attend with Mark and the other kids. Every year, it is one of the highlights of our fall! All the kids love it and start asking about it months ahead. Some like all of the food that is donated by local business. Others like all of the endless fun activities available to do. The shows and demonstrations by the Gopher Athletes that volunteer for the day are a hit with the kids as well. But my favorite part of the day is getting to connect with other families who have their own personal heroes.. their children who battle life threatening illnesses. It is so great for the other children to see that they there are other families out there that deal with the same kinds of issues there family deals with....and they can still have lots of fun!
Aaron's favorite place was sitting right next to the dunk tank! He loved to get splashed each time Josh Taylor, the Hopekids director for the Minnesota chapter, got dunked!
I didn't know you could make a squirt gun out of a water bottle with nothing but your teeth..but the boys mastered that skill early on...they are overachievers!
And, my favorite picture of the day! I was thinking of titling this, "Kiss my small horse...", but I now that would be tacky now wouldn't it?! Isn't that a sweet picture?!
at 7:20 AM