Sunday, June 14, 2009

Time for Change

The time has come, we have resisted it, we have squinted up our eyes and looked sideways at it, we've even turned our heads and looked the other way trying not to see that it was coming, but at last it is here and we have no choice but to admit it. On Monday I will call United Seating, the people that procured John's chair, and set an appointment to give the chair a little check-up and to give the boy more speed, acceleration and open the chair up and see what it can do. If you get to be around John and his chair, and you ask if he'll let you, reach over one time and push the control joy stick, it's touchy, it's very sensitive and it's very picky about how it is handled and yet John can use it to slowly follow someone who needs to use a walker without ever getting close to them or making it appear that he is really doing anything other than floating behind them. He can pace us smoothly as we walk, he can glide right up to something without every touching the foot plates to it. He's still 5, but we wouldn't tie the legs of a walking 5 yo together to keep them slowed down and so the time has come that we let them open up the chair. It's a nice time, it makes us smile, fear a bit, but smile!




Couldn't help but share some more pictures, sure is nice to be home near the real camera, and with a boy who is really feeling good.

Saturday, June 13, 2009

Those Promised Pictures


Ah pretend eating, John loves, loves, loves kitchen stuff. When we got to the playroom he squealed with delight over the little kitchen. He loves to shove stuff, I mean cook in the little microwave, cram stuff in the oven, um bake, and have us taste everything he makes. When the playroom closed we got to take a big bucket of kitchen stuff with us and John sped to his room, and sat happily on his bed cooking, serving and pretend eating for quite some time. I keep thinking, ah this is so cute, we should buy him some kitchen stuff for at home, and then he signs all done and the bucket of kitchen stuff sits untouched in the room for the rest of the time we are at the hospital, nope it's a treat somewhere else, it'd just be another ignored toy at home.


Throughout John's time at the hospital we have collected a bunch of favorite nurses and doctors, before we left yesterday we were able to get a picture of John with one of them, Kristin is great and while we don't relish the thought of being inpatient or John being sick, it's always nice to get to see her.

During this whole round of in and out of the hospital, here, there and everywhere, John has, as usual, taken a few medical steps backwards, his feeds are way down, he has a central line and is on tpn and lipids again, and of course IV Cipro because what would a central line be without a central line infection. These are always hard to see and make us sad. While we will have to almost start over with the potty training thing, apraxic kids are notoriously hard to train anyway, we've seen him do many other things that make us smile, cheer our hearts, and leave us cheering for him. John has transitioned himself from a sippy cup to an open cup, except for when he wants to drink while laying in bed and then reverts to sippy cup or straw. He has gone from being a pretty good power chair driver to a down right phenomenal power chair driver, especially when you remember that he is 5 1/2 and is driving a chair with all the weight and power of an adult chair and with nearly all of the speed and acceleration. John's chair can go as fast as an adult can jog, it accelerates from stop to full-speed in the length of a bed, guess how we know that. John has read a 'stop' sign, last night read 'bear' every time it appeared in his 'Bear Snores on Book' and has cleaned up many of his signs and learned many new ones. He is eating again, partly due to g-tube feeds being so low, but he is feeding himself better all the time. He is so much more little boy with each passing day and this round of being sick seems to have not slowed that progression at all. He is even getting to be a little more social, and is learning to show off, which is hilarious. His favorite thing to show off is that he can drive his chair backwards down the hallways while waving and smiling at pretty volunteers. He is more able to answer direct questions from us, and tells us more about what he sees. His chair lets him reach so many more buttons and so has figured out how to operate every handicapped accessible anything and the elevators including knowing to push 'up' or 'dn'. He can get his own ice from the ice machines and fill his own cup from the water fountain without drowning himself or passerby. Even things he hasn't done in a long time, like lay still for central line dressing changes, he picked right back up. I am constantly amazed by this kid. I would say that other than the independence that he has gained with his chair my favorite part of the power chair is that now others see the smart along with the cute.

While in Omaha we got a chance to go to the zoo with friends. This is the first time that John had his chair and so had the independence to go and see what he wanted to see. He has always loved the aquarium, but never really had the energy for much beyond it, this time he got to enjoy much more of the zoo and much more of his friends there. He loved the plastic chains that hang at the front of the bird exhibit and had the best time running through them and gathering them up and playing with them. I asked him later what was his favorite part of the zoo, part of apraxia is an almost perpetual stage fright making it very difficult for John to get to tell what he likes and such. It took him a while, but eventually with a huge grin on his face he told me that his favorite part was going fast with his friends, and watching them as they ran along and giggled and carried on with them I'm guessing it was a part of the zoo they enjoyed too. Charity posted picks of the zoo trip to her Facebook page, if I did the link right you should be able to see them. Zoo trip with friends.

I will continue to update the blog, but for daily, sometimes more than daily updates on both John and life around here I use Facebook more. If you want to find us on Facebook we're there: Ageena Hass and Mark Hass, and we'll always be glad to visit, here, there, or even in person when the chance arises.

Thursday, June 11, 2009

Full Goal Position

Since I wrote that depressing post yesterday I thought I would try to pass along something more um well here...

text from Mark - John is still sleeping (it's 8:28am), full goal position.

Translation: John is stretched completely out, arms up over his head, legs all the way straight, this only happens when he feels really good, no matter how many drugs or whatever he is given if his sleep is the least bit artificial or uncomfortable he is not in this position, this only happens when is naturally, comfortably asleep and we haven't seen it in a while. This mommy is cheering!

Wednesday, June 10, 2009

Maybe I Should Not Do This

tonight, maybe I've been running on fumes for too long, but it just seems to be coming out and so here it is.

John made 250 days with no hospital, no ER, no IV's, 250 beautiful days in which he played and had a great time, learned to use his chair, stretched his wings and felt the independence that little 5 year old boys should get to feel. During that time he recovered from fighting off a series of intestinal viruses, took on a huge UTI, and overcame yet another virus. He is the most amazing kid I know, his love for life is contagious and his smile illuminates whatever space he is in. I am so privileged to be his mommy and I got so spoiled in those 250 days, when it came time to take him to the ER again I didn't believe that he would need to be admitted and even as I sat in the hospital I watched him play and enjoy life and was able to deny that he would have more horrible things to go through in this life.

Since just before Mother's Day he has had so many IV's that I've lost count, he still only barely cries when he needs one and says thank you to the person putting it in when they are done. He has been admitted to University Columbia several times, and is there again, he has been both inpatient and outpatient in Omaha and spent the weekend in Children's Mercy in Kansas City. He's gone through an upper GI series, a ton of blood work, had a central line places and then had to undergo yet another barium enema. Through all of this he has found reasons to smile, reasons to giggle, and brought joy to countless people who don't even know his name, but can't repress the smile that comes when you see a little boy gleefully speeding down the hallways and whipping over to play with a water fountain.

There seems to be a perception out there that Mark and I are very strong and that we have this great faith because we go through all this with John and continue to believe in Christ. This is so far from true, we are so weak, we hurt so bad, we would gladly trade places with John, I can't tell you how many times I have held him for an IV seeing the bulging veins in my own hands and wishing that they could be poking me instead. We are broken, sin filled people, we fear that our little boy will die and that we will not get to hold him and hear him giggle any more. We cry out to God for mercy for this little boy, for all the little children that go through these horrible things and yet we hold on so tight to him, knowing that if the day comes that we must let him go we will be devastated and unable to draw a breath that doesn't scream with pain.

One more time John is hospitalized, this time he has a gram negative bacteria growing in his blood, they've caught it, the antibiotics are working, he even made it 7 hours today before needing tylenol, but still the flashbacks to other times come. I know that John is sleeping peacefully, his little body fighting off this bacteria with the help of these drugs, that his blood pressure is stable and his heart is beating regularly and his breathing is unaffected and his little brain is churning and learning and growing all the while. Still I can't forget the PICU, I can't forget the monitors, the tubes and wires and pumps, and breathing machines and swelling and pain and being unable to be brought around because the least bit of release from the drugs that kept him unconscious let him fight and the fight was taxing his system too much and killing him. I know this isn't that time, I know there aren't doctors standing around discussing when they are going to ask us to sign DNR orders, and I know that he is fighting through this and yet the bad days haunt my mind and drive the tears from my eyes.

When Christ says 'o ye of little faith' He is talking to me, those Words are mine, they are aimed right at my heart. I know that John is Christ's child, I know that even the hairs on his head are numbered and that Christ gave His very life, His very blood for this child, but still I cry out in doubt and pain, still I shake and I tremble with fear, still I cannot trust.

John will likely come home tomorrow or the next day, hopefully at least by Sunday, as his mommy needs Holy Communion right now more than she needs air, water or food. His smiles will fill my heart with joy, seeing the joy he gives others will be treasured in my heart, and yet I cannot let go of the knowledge that surgery is coming. I know, I understand, that it is for the best, I get it that it will give him the chance to soar, to grow, to maybe even have more than 250 days of freedom next time, but somehow that is just a little less real than the memory of surgery last time. The scared look when the surgeons carried him away, the fear in his eyes when he woke up in pain, the tubes, the cuts, the recovery time that is so long, and yet even from here I know that the recovery time will have time when he is smiling, time when he is excited to see friends, and this time should be shorter than last, oh God I hope.

If you've read this far all I can say is I'll put my camera in my bag to take to the hospital tomorrow and post some pictures soon. You will see he looks great, a little skinnier than last time, but happy, beautiful and amazing and all this despite a mommy who is weak, sinful, and a woman of very little faith and very many tears.