Back to see the Doctor

Lilly woke up this morning not feeling so well, she started throwing up. I checked with her pediatrician and they asked that she come back in because she might be having complications. 

We had Lilly checked out with the Doctor, they found white blood cells in her urine, her ears have not improved and she is still running fevers plus tummy pain.

The doctor said that it looks like Lilly has a bladder infection, but there is a chance that it is her appendix, so he set us up to have an ultrasound if she starts getting worse and if it gets real bad real fast we got straight to the ER.

The Doctor also gave Lilly a Antibiotic shot in her leg, this will help with the infections both in the ER and the Bladder, it was a very painful shot, but Lilly did great!

Wee fun... 

Ear infection

Miss Lilly had a bad night last night, woke up crying and complaining of pain in her left ear and cheek.. She is still gettin over the cold so she still has a bad cough and the sniffles. Anyways, we give her some pain medication and put her in bed with us... What a LONG night, she tossed an turned and seemed to be up every 30 minutes and none of us (except Logan) got a good night sleep. 

She woke up in pain so we took her in to see the doctor, they tested her ears and then checked them, the left ear is completely blocked with infection and the  right ear is partially blocked. 

So we have another round of antibiotics and a follow up visit in 1 week to make sure she is improving. 

I have missed so much work this last couple of weeks it's crazy! But our kids some first!

Rush Appointment and Results..

We made it to see the specialist yesterday, Lilly has been running a fever, with a cough and increased leg pains in both legs. 

The doctor had told us, if Lilly gets sicker or more pain then we need to come in and see him so just 7 days before are set appointment we went in.

Due to Lilly having a cough she was required to wear a mask, she wasn't happy with it at first, but dealt well with it.

Ok, so we get to the back and they check Lilly's vitals, all looks good and she gained 1lb, then we are into the room to see the doctor.

Right away he goes into how he has most of the test results are in, just one more we are waiting on. After checking Lilly out he thinks she just had a cold, but to be safe we were sent for xrays of her lungs to look for fluid and masses like the one on her neck, also xrays of her knees to see if there is any abnormalities, infections or masses. Results for the xrays will be in today/ tomorrow.

Here is the basics of what David and I got from what the doctor said about the test results.

1. It is NOT organ-specific autoimmune disorders  - per the blood work

2. There is a chance that it is non-organ-specific autoimmune disorders specifically the doctor thinks it's Juvenile rheumatoid arthritis. On her blood test her inflammation levels are very high above normal.

3. On the 18th of this month Lilly will have another blood test done, this one in regards to the lymph node, the lump/ mass on her neck. The size of the lump/ mass is still the same, no changes.

4. On April 11th we will see a specialist who deals with juvenile rheumatoid arthritis, they will do a large amount of blood work to run their own test, Lilly's hematologist oncologist will join us for this appointment to go over everything with the new doctor, he is trying to rush us in to see this other doctor so the date might change.

5. On April 16th we will go back and see Lilly's hematologist oncologist to review his latest blood work and talk about what the other doctor has found if the results are in. At this time they will also test her for TB, HIV (this is standard and she is in no way at risk if having HIV) and they will also test her for cat scratch fever, my mother had mentioned the cat scratch fever to me and so I brought it up with the doctor, he laughed and said your mother is correct and we do need to check for that. (Lilly's cat Sky came to live with us just before she got sick).

6. Three months from now Lilly will have surgery to remove the lump/ mass in her neck, completely remove it and then they will biopsy it. 

Other information - Lilly easily picks up infections / virus, etc. But her blood work shows she is able to fight them off, this means she is more prone to getting sick more often then most children. They have no idea if this is a symptom of something from above or just who she is, but we have to try and keep her away from sick people and places where germs are spread easily.

Lilly's Hematologist Oncologist is working to eliminate possible things it could be, so it takes time, test and more time... We will have answers, it just wont be as soon as we like.

As always I will keep you all informed on Lilly's progress, thank you for following, your support and kind words, thank you for your postulates, prayers and best wishes!

Lilly's caught something..

Lilly started with a little cough a couple of days ago, last night she spiked a fever and her cough sounds awful. We had her sleep in our bed so we could keep an eye on here, she tossed and turned all night and at one point was drenched in sweat!

I was able to get ahold of the specialist today and we have an appointment at 1:30 today to get her checked out.

Maybe we will even get the results of the last test?!

I will let y'all know how it goes as soon as I can.

Q & A

Q. When will you find out what is going on with Lilly?

A. Our follow up appointment with the specialist is on March 18th, we will be going over Lilly most recent blood test results. We may not have an answer as to what is going on, but should have some ideas of what it isn't and then make plans for what we will be doing next, maybe the biopsy or a full extraction of the mass/ lump in her neck.

Gardening with grandma

Grandma took Lilly to Home Depot today to pick out some plants, they want a garden and to be able to grow their own fruit and veggies! Lilly loved it and then can home and helped grandma plant everything... Then her and Kassy went to play in the dirt making dirt pies! Lol

Lilly goes to work..

We have to keep Lilly away from anyone sick, she doesn't seem to be able to fight off infection and so when grandma texted me that she wasn't feeling very well, I had aunt Christine, who happened to have the day off go by and pick up Lilly. Only 1 problem, Christine had an appointment at 1 and I don't get off work until 1:45. So I let my boss know and told him how about instead of me leaving early, how about Lilly comes to work and hands out in my office while I finish up my day. I was agreeable to the solution! Lilly had a good time too!

My girl loves art

Lilly loves doing art projects... she spend some time with both her aunts on different days and did art projects with both of them! 

Art project she did with Aunt Grace, lots of glitter made her so happy!

Thanks Grace for spending the time with her making her day fun!

Art project she did with Aunt Christine, using stuff found around the house, not she thinks anything we have handy should be glue to paper! Thanks Christine and Kassy for a fun afternoon of play and art!

Lilly and Daddy cuddling

Lilly and her cat

Here is Princess Lilly resting with her cat Sky and watching cartoons on my tablet.