Wednesday, June 15, 2011

The Illusive UTI

Our grand adventure started this past Sunday, as I stopped by James David's dad's to pick him up after work. Dad said he had been clingy all day, and when I pick him up I immediately know why. He's running fever. 101.5. And he has this weird rash on his left thigh. Well crap. On the way home I call the Ped's after hours line. Like always, because he has a VP shunt they tell us to head to Children's ER.
Upon arrival I tell the triage all about his condition and show them the rash. Because he has a shunt we go straight back (Probably the only perk from it is no waiting rooms). Since he is running fever they give him some motrin and it almost instantly (as quickly as motrin can) resolves. Since we had two shunt revisions last month, they are very worried about infection. They do a head CT, shunt series x-rays, a shunt tap (getting almost no CSF), and (bc I requested) a urine analysis.After all this they tell us they can't really find anything, but they are gonna run a few more tests and admit him for observation (Talk about making you feel like a lab rat in a science experiment). 
So there we were, home sweet home on 6NW. Our favorite wing of the hospital because they have the best rooms and the least pushy nurses. Only to my dismay, as we enter the room I find that it is missing my two favorite things: the window and the couch. Upon further investigation I learned that they had to put in a stair case to go to the new wing of the hospital and so they had to shorten that room, but not to worry they weren't allowed to keep us there more than 23 hours because we could go crazy not knowing the time of day with no window (real encouraging). 
The next day came and we met with the neurosurgeon who was very confident that it was not a shunt issue. (Praise the Lord). So he passed our case along to the urology team. After much ado, they determined that it was a minor UTI (How hard is that to figure out really? Either there is an infection or there isn't.) But I learned this from our neurosurgeon (possibly the coolest doctor ever) that neurogenic (did I spell that right?) bladders are consistently dirty bc they don't ever empty. But the urologist gave us a prescription to clear up this infection and another to take to prevent further infections until his circumcision next month (This will supposedly sure all of our problems. We'll see...) and told us we could be on our way the very next morning. They also found a bacteria in his bladder that is contagious and put him on contact isolation. Yay for yellow gowns and blue gloves for every foreigner who enters our room. This has happened to us the last 3 hospitalizations. What gives?
But with our new sickness mystery solved we passed our time wandering the hospital making new friends, sitting in the cat walk and watching the cars at the stop light, going to the library, and celebrating James David's 31st day of hospitalization (Yay for a whole month of his life in white-walled, disinfectant territory). The next day (now Tuesday) and we prepared for our departure. But it never came. Neurosurgery came in and checked on us and said Urology would come  by later and discharge us. By 13:30 I was getting impatient. After finally bugging the nurse enough (Poor Mary...) she found out that neuro forgot to tell uro that they were supposed to come by, and they were fighting over who should officially write our prescriptions. Uro finally gave in because it was obviously a urological problem. As I wait on our prescriptions at the Out-Patient Pharmacy I am told that the doctor forgot to write in the dosage for the antibiotic. I look it over and low and behold it was written by a neurosurgeon... (Really guys?) But the awesome pharmacist gets it handled in a jiffy, only to tell me that I will need prior authorization for that prescription and to have it filled at our hometown pharmacy... But regardless, after two virtually sleepless nights on a very uncomfortable, tacky blue plasticy, pull-out hospital chair we were finally on our way home :) We celebrated by chilling on the couch and watching Sesame Street all night.

Thursday, June 9, 2011

Our crazy life :)

Things have been pretty crazy around here. 
We recently even went to a doctor appointment ten days early. Who knew the 6th and the 16th could look so similar on an appointment slip?? But we are always over prepared to see our favorite neurologist. :)
Yea so short of mommy losing her mind we haven't been up to much. 
Our days are filled with snuggle time, Sesame Street, therapy sessions (still no luck on crawling), petting the puppies, eating lots and lots of baby food, and our favorite: Bathtime :) 
He has discovered his love of swimming. Drinking the water is his favorite part, but splashing is a close second. 
We went in for his 9 month check up and he's still a tiny guy. 16 lbs and 26 in. lol He's still in 0-3 month clothes. But I love my tiny guy. :)

Friday, May 13, 2011

Ordinarily Extrordinary

Today started the same as any other. 
Get up at 5 a.m. and feed James David. Then, go back to sleep. 
Get up at 7 and watch Sesame Street. Go back to sleep. 
9 Feed James David breakfast and give him meds and get puked on. 
Then off to cleaning and other normal day jazz.
But then, during a completely normal therapy/play session (You know the ones where I end up extremely frustrated because all he wants to do is roll to his back and then lay there and yell at me) something amazing happened!
It was slow at first, and I was almost unsure as to if I really believed it happened. 
But then it happened again and again. Getting more definite each time. 
Sure as the grass is green James David pulled his knees up under him! 
Once he got them there he would usually push them right back out, but once or twice he did rock back and forth. 
It was nothing grand or spectacular. He didn't get up and crawl away (or anywhere for that matter), but it was a small victory in our day. A brief reminder that we will get there someday. A glimmer of hope in his pretty blue eyes. 
Then the day carried on as normal. Dishes were done. Laundry was folded. And everything went back into its usual routine.
But as I crawl into bed tonight you better believe that my mind will drift back to that joyful moment that I saw my son do something he was told he may never do. I saw him defy the odds, grow confident in himself, and be as stubborn as his parents, no matter how scared he might have been. These are the moments that I live each day for, and this is the one that will brighten my dreams tonight.

Friday, March 18, 2011

Quite a Personality

Over the last few days my tiny man has decided to amp up his already quite hilarious personality and let me tell you, he has had us rolling in laughter. 

1) He has learned to lean and grab for the person he wants. Only, he can't figure out who he wants. So we are constantly passing him around. My mother works in a nursing home and we were visiting there today and he wanted everybody to hold him. Nobody was safe from James David kisses. 
2) He has decided he is absolutely the center of the universe. If you walk into the room and don't specifically show him attention he will flail his arms up and down like a crazy man until you do. 
3) Also I am not allowed to leave his line of sight. If he can't see mommy things get ugly. 
4) His love for Sesame Street continues to grow. He will watch it for almost 2 hours straight (that's a long time for a 6 month old) if I will let him. I have found this is the ultimate distraction for giving him medicine or enemas. He just stares at the TV.
5) If he wants it he is going to try his darndest to get it. At a consignment sale today he just reached his little fat hands down and picked up the toy he wanted. I was like "Well hello there!" He almost jumped out of my arms for a Sesame Street book that had Elmo on the cover. 
6) Lastly, he has learned to shake his head "NO". I don't know where he learned it from but buddy he does it to everything. You can say just about anything to him and you will either get a big giggly smile or arms straight out beside him and a big fat "NO" headshake.

Needless to safe life has become quite an adventure these last few days. We go next week to see his orthopedic and hopefully at least get him in some night splints. I can only imagine what kind of trouble I'm going to be in when this little boy gets mobile. Say a prayer for me in advance!

Wednesday, March 9, 2011

Rest? What is that?

It's been a while since I've blogged. There has been so much and so little going on its hard to find the motivation.
We moved and I've been taking four classes. Between homework, cleaning, and the 4 hours I spend in a car every Tuesday and Thursday taking James David back and forth to daycare, its been hard to find the time.

Not much has changed with James David. He is still just the happiest little baby in the world. All 14 1/2 lb of him. I can't believe its been six months already. When they say time flies they aren't exaggerating. We've recently had some tests done on his bowels. All looks good :) He's starting to kick his legs more and his recently discovered his toes. Apparently they are very tasty. I never would have guessed that but he continues to teach me new things everyday. We watch Sesame Street 3xs a day... the kid loves it! He is one smart cookie.

Life is so peaceful right now. Doctor appointments have finally settled down. We have no tests or evaluations this month. We just get to sit back an be normal for a little while and we are enjoying it. =)

Saturday, January 15, 2011

Its been awhile...

Sorry for the long wait, but so much has been going on and I really just couldn't fine the words. But I'm ready to share so here goes :) Bear with me this is gonna be long.

James David had a fabulous 1st Christmas. He got all kinds of toys and just loved every second of it. He is quite and attention hog. 

James David also started Daycare! He goes on Tuesdays and Thursdays. Its a great facility that works with both "normal" kids and special needs kids. We are super excited about this. Its very hard place to get into and will help him grow and adjust in so many ways. He chills all day in a a class room with 9 other babies and 3 or more women who just love and snuggle on them and play with them all day long. Also his therapists work with him there. This place is just so amazing I wish I were 4 years old so I could go there and play. 
My boy is growing up so fast. He's already 2 feet long and almost 13 lbs. He has great fine motor skills and his constantly putting everything in his mouth! I gave him some foil wrappers to play with yesterday and he managed to lean over and pick it up with his lips, sit back up, and smile. It was the cutest thing ever! Also, he has started picking his legs up to his chest! Every time I change his diaper he is constantly kicking his legs around so much that its annoying to me, but I just can't help but smile :) I am so proud of him. He can roll from his tummy to his back now too. He is the happiest baby. He laughs out loud all the time. He is the joy in my heart that helps me make it through each day. 

We are having a few problems though. POOP. It not consumes my every thought. Has James David pooped today? How much? What did it look like? Did he realize he pooped? Did he cry? Has he had his laxative? So on and so forth. We are going to see a gastrointerologist soon and hopefully that will answer some of our questions. He gets in so much pain trying to go right now it breaks my heart. :( 

But all in all everyday is an adventure and James David and I are exploring the world together. Everyday we both learn something new. Crazy how the world changes when you have a baby. Its like I'm seeing everything through a new set of eyes.