Finally!

This morning the pediatrician came in with some good news finally, the labs that were drawn yesterday came back looking pretty positive. His abdominal sonogram was perfect as well, his kidneys and spleen look perfect. The numbers for his reb blood cells came back low again, the first test they were 7.4 and now they are 7.2...normally is 11-15. So he is still very anemic and on top of that his bone marrow is still not producing the red blood cells that he needs so that is an issue for Hematology, the one group that hasn't been working that well with us.

His doctors have gotten together and decided that GI needs to step back in to do the colonoscopy and endoscopy to see if there is bleeding in those areas that are being missed. The hematologist said they wouldn't do a blood transfusion until his GI track was looked at to make sure there isnt any bleeding there that needs to be fixed.

Then another GI doctor came in and said "wow, he's pale, we won't be doing the procedure until he has a blood transfusion". Grrrrr. First off, yes I know my child is white...I always thought that I just had a really white kid. :) Secondly, I guess he will be having a transfusion now but thats for the hematology dr and gi dr to figure out.

I'm tired of all of the back and forth. I think that happens anywhere you go though when there are too many cooks in the kitchen...well you know.

Here's Dennis' morning status update, it explains in a little more detail than my stuff does.

Morning Update - Kaleb's doctor came in this morning to update us on the labs that they pulled yesterday. The white blood cells that were at 23 are down to 6. The inflamitory labs (i forget the name of the actual test) are down as well which is good. His kidney and liver labs came back normal. His electrolyte test came back normal. The anemia came back at 7.2 which on Sunday was at 7.4. The doctor... is not concerned with the drop. Kaleb had a couple fasting labs that were ran this morning that we will not get back until later today.

The doctors plan is to get with hematology to see what they are thinking. Yesterday they were supposed to do a blood smear test to look at Kaleb's red blood cells. The doctor wants to get at the root cause of why Kaleb is anemic and so I think that he will be presuring hematology to get some answers.

        

Antibiotic Ups and Hemoglobin Downs

It looks like the antibiotics are finally working their magic on that mysterious infection. He hasn't had a fever for a day and the swelling has gone down in his right leg. He is also more active, even with severe anemia.

The Hematologist came and finally spoke to us this morning. She is waiting on the blood transfussion until another round of labs can be done tomorrow to see if his bone marrow has started working more or not. If Kaleb's hemoglobin numbers still aren't higher then he will need the transfusion. More waiting until tomorrow's labs are completed and read...

The Infectious Disease doctor came in this morning and said that there was clearly a large infection somewhere and they need to find where it came from. He ordered abdomen sonogram, chest x-ray, and a virus workup. This should be fun.

Everyone seems pretty stumped. The GI doctors have backed off a little bit and said that if the other bazillion results are negative and we are all still confused then he will do a colonoscopy to make sure there is not more bleeding in the intestines than we think there is (we are pretty sure it's minor bleeding and wouldn't be causing the crazy blood loss.

{i never finished this blog and will continue with more recent updates in the next blog post}

Hospitalization and the Nolan Dance

"Painful as this time is, you will one day see the reason for it. Not cruel testing but tender preparation for the wonderful work you are to do."

Here is a quick rundown of what has happened for the past 72 hours with our little man.

Saturday:
Kaleb had a fever of 103.5 and was very lethargic. We treated him with Motrin and Tylenol and lots of rest.

Sunday:
He took a nap around noon and about 4-5 hours later I decided it was time for him to wake up. I took his temp and it was 104.2. While changing his diaper I noticed that both of his legs, below his knees were swollen. We called his pediatrician on call number and the nurse told us to go to the hospital. I took Kaleb and the hubby stayed with our toddler. We sat in the waiting room for a few hours and finally went back. X-rays were taken and lab work showed there may be an infection in his soft tissues and bones. Kaleb was admitted. Kaleb's white blood cells were 23, normal should be around 10 or lower.

Monday:
We didn't get our hospital room until 5 am. Kaleb was admitted to the Ortho Neuro Unit at Arnold Palmer Hospital. Kaleb had an MRI which showed there was no infection in the bone but possibly some in his soft tissues. Monday night his orthopaedic doctor came in and said there is absolutely nothing wrong in his foot and feels confident that is not the location of the infection. More blood was taken for more in depth studies on his blood.


Tuesday:
The results from last night's blood work came back showing that Kaleb is severely anemic and there is bleeding somewhere in his body. At the same time, his red blood cells should be higher than normal to compensate for his loss of blood. However, his bone marrow is not adequately producing red blood cells to help the situation. On top of that blood was found in his stools which raises even more questions. With all of that his pediatrician on the unit decided it would be best for Kaleb to have a blood transfussion. He made sure hematology came in to speak to us along with infectious disease doctors. They both asked a bazillion questions about our families and health issues within the family. The main hematologist who has the final say in whether Kaleb gets a transfusion at this time never came to see us before she left for the night. What the hell lady? Before the end of the day Kaleb also had a renal ultrasound (kidneys). Kaleb finally slept in his hospital crib [he hates that thing]. He slept for a good 6 hours before some crazy night nurse thought she should wake him up for his antibiotics. He did go to sleep for a little bit more after she left as long as I was holding him in my bed so that was nice.

Wednesday:
 The pediatrician on the unit woke me up out of a dead sleep, I was probably snoring with my mouth wide open and maybe some drool coming out. I apologized a million times to him. He said Kaleb's renal ultrasound looked good but did show that he still has hydronephrosis in his left kidney and it's a little bit worse than when he was 3 months old and he had a renal ultrasound then. He expressed being upset that the head hematologist did not come see Kaleb last night because he has labs he needs to draw before the blood transfusion and everyone is basically waiting on what hematology does. He said that GI told them after their consult yesterday that if tests continue to come back negative they will go ahead with the colonoscopy.

And here we are...Wednesday morning at 8:29 am. We have no discharge date in site and still so many answers to get for little man. Kaleb came up to the hospital last night and was excited to finally see his brother, he kept asking for where baby was. Nolan is so sweet. Speaking of my Nolan, we went to Best Buy yesterday with our dear friend Tiffany to get her a laptop. During her search Nolan heard music playing from the car area and ran over there. I took the following video there. Listen really closely at the end of the guys who are laughing at Nolan. He's such a little entertainer!

Thank God for my big man Nolan to help keep me grounded. Who doesn't like dancing in a store? I danced a little bit with him yesterday and it was great. We should all take some time out of our day today to dance silly with our kids. What a great feeling!!

Aquatic Therapy and Playstion Issues

On a weekly basis we are running around Orlando taking my baby cakes (not to be confused with my toddler cakes) to therapies, appointments, tests, and fittings for orthotics. Kaleb is currently in physical therapy and occupation therapy once a week. He does pretty well during his occupational therapy (less work on his part) but cries normally throughout his physical therapy. We were excited when his physical therapist told us about a new therapy the hospital was going to be offering at the downtown YMCA, aquatic therapy. Kaleb started about three weeks ago and I couldn't wait because I know how much the water can help someone with muscle issues and if you know my baby like I do...he has muscle issues, he's hypotonic to be medically correct. Basically...he has very low muscle tone. I could tell from the first times I held him when he was born, he was more "floppy" than other babies...if that makes sense. He has almost no muscle tone in his right leg from that damn 6 month casting and very little in his left leg. His back and shoulders are even worse, his shoulder blades stick out and it's hard to pick him up...almost feels like he will fall out of your arms.

Anyways, I knew aquatic therapy would be the "answer" and help these issues AND I already knew that he loved water. My friend and I take him to the pool and he just sits in his little seat calmly and kicks away. He also loves bath time.

{Kaleb first getting in the pool, he's a lady killer}

Wow. Could I not have been more wrong? He hates aquatic therapy. To the point where he's not even getting any therapy because he gets so tensed up that his legs stick straight out and are hard to bend. There is no kicking. He did however bare weight on his legs today so I guess that's a plus since he isn't doing that out of the water. As soon as I hand him to his therapist, he SCREAMS and pouts his lower lip. It doesn't help that we are now in the indoor pool so everything echos in there. [Sorry senior citizens who try to do water aerobics next to us].

Kaleb is very attached to us so normally I understand when another person holds him and he starts freaking out but he has been in physical therapy since he was a month old and she does his aquatic therapy as well. Hmph. I'm sure it will get better but just a little frustrated with the constant crying during some of his therapies, you need this dear child!! For now he is my little turd but I love that little turd.

{the ONLY time he was not crying}

{kick baby kick....Kaleb you need to kick....KICK!!!}

Oh not to mention when I got home late from work my husband told me right away he was playing a game with his coworker in a few minutes and would be ignoring me. Yes, he actually said that. He is now in his man room with his HEADPHONES on and his MIC yelling cuss words and screaming at his opponents. I keep having to shush him because from what I understand we have two children sleeping, maybe that's just me though.  Just now, after getting a beer he puts his headphones back on and says, "this is what i need after a long day, some man time and killing people". Oh how he makes me laugh. For now he is my little turd #2 but I love that little turd. 

Birthday time!

Birthday
I had such a great birthday weekend. My mom came in town to go shopping with me on Friday and she stayed the entire weekend. Loved it! Then last night Tiffany came over and we all had a big dinner and "coldstone" type dessert. Complete with bowls of things to add to the ice cream and Dennis mixing them in. It was great. Now Nolan and I are just wrecking the house (more him than me) and reading about organizing things (more me than him). 


Convo between me and Nolan a few minutes ago-- 

Nolan: where's dada?
Me: At work.
Nolan: where's mimi?
Me: At home.
Nolan: Where's Titney? (<--- yeah Nolan can't say Tiffany yet, sue him)
Me: At work. 

I'm sure the previous conversation is going to repeat several times today. Those are his three favorite people besides his mommy...of course.  


Organizing
I'm in a very organizing kind of mood. I wish we had a container store, although that would probably end up being a terrible very bad thing. I'd love to organize the pantry, it really bothers me and it's oh so small. If only I could knock down the wall and extend it into my dining room. I'd rather have a smaller dining room and a larger pantry. 


Man Cave
We have now finished our "man cave". It looks very nice and doesn't have a man cave feel to it at all. We ordered a leather couch that pulls out into a bed. Dennis has a flat screen TV in here along with the computer and his gaming systems. We also can't forget the head phones that go with the gaming systems, one night a friend and I found Dennis hunched over in a chair with these huge things on yelling at people through them. Hee-larious. Well now at least he can do that in his stylish man cave and maybe won't look AS silly, nevermind...he will always look silly with those things on. 


News
I also have some news coming within the next few weeks. I'm not sure why I don't just talk about it now but I guess I figure there are so many people on facebook and blogger and maybe I want certain people to know before others? I'm not sure. It could also be that I won't believe it until it actually happens so I don't want to jinx anything? And NO, I am not pregnant. But I am oh so giddy and such a lucky girl. ;) 

Oh how...

Now, what if I'm too tired to do all of them except sleep when tired? It says I should sleep. 

I should have had this as a kid. Shouldn't we all have? 

So true. Everything to me is coke...pepsi, dr pepper, etc. 

Oh so true. I love my Denny! I'm such a lucky girl <3

I miss our basset Sadie, I love you girlie. I used to laugh when your rolls would dance :) 

Well even though this has been fun, apparently the baby feels that 10pm is wake up time? He's slept through the night since he was itty bitty...what the heck? Lets hope he doesn't wake up the other stinker. 

Halloween Fest

Last night we went to Halloween Fest in downtown Winter Garden (the new town we moved to, since I forgot to blog about that part of my life). I read about it being lots of fun with a petting zoo, live band, face painting, and trick or treating at the shops down there. When we got there...Wow. That's all I could think. There were hundreds of people there. Streets blocked off. Adults in slutty costumes, teens in slutty costumes, huge dogs dressed up, police, EMTs, and people everywhere I looked. I loved it, don't get me wrong. But I guess I never thought what it was like to CHASE a 2 year old from shop to shop looking for candy and trying to not lose him in the crowd. Of course said 2 year old was screaming at me not to hold his hand and "me do it". I never knew he could run so fast. I actually had to run. After my kid. At one point while he wasn't looking in front of him he almost ran into a woman dressed as a slutty officer with her butt cheeks hanging out. That would not have been pretty. I'm pretty sure I would have washed his face in anti-bacterial gel.

It really was a lot of fun. He was super excited. Of course there was a melt down on the way to the car and that same two year old nearly running into traffic. I think I remember at that point pushing the stroller and quietly yelling at Dennis, "get him get him, going into traffic, go, NOW".

Once we got back to the car we let him have his pumpkin with his candy in it. I didn't think there would be any harm in it, he's only 2. I mean how much damage can he do right? WRONG. We recently put him in the VERY back of my car in the third row seating so I'm not as privy to what goes on back there. At one point he was telling me something was gross and I looked back and he had some gooey-ness all over his face and his fingers were sticking together. I couldn't figure out for the life of me what he had gotten. I also still think the wrapper was on half of it, hopefully the half he ate was already de-wrapped. Dennis looked back and said, oh he got a Charleston Chew. A what?! All I knew was it looked gross. When we got home I saw that he had dumped some of his candy into the cup holders in the back so I told him to get the pumpkin so I could grab the candy and put it back. I put my hand in one of the holders and all I felt was ewww stickiness. I guess I found the other half of the Charleston Chew. I didn't even turn on the light to look, I knew I needed to sleep before I saw that mess.

Of course when I got there my phone died so I don't have any photos of the maddness...but really what time would I have had to take pictures? All I would have gotten would be his back and a running motion type look to the picture. BUT I do have his photos that his teacher posted on facebook...that was the less risque Halloween party of his day.

Nolan, Sanela, and his girlfriend. 

My hunka hunka man.