No news is ... no news.

Just wanted to update you all really quick.

We took The Princess to her hematology and rheumatology appointments on Thursday.

I am SO thankful that Wendy mentioned having ANY lab work done with the same poke. The Princess woke up saying "No poke me!". When we went into our exam room at the hematology appointment I asked if they could talk with Rheumatology to see what labs they might want. They agreed that one poke would be best for her, and took care of getting the orders faxed over from the other building. So, we had ONE poke with FIVE vials of blood.

And thankfully, her platelets are UP still from the last round of IVIG. Her count was 127,000. We are hoping they stay up for a long while this time around. She follows up there again on the 30th of this month.

Then we wasted the day doing some shopping and having lunch with my mom. Then we rushed back to the children's hospital for the Rheuma appointment.

Part of the lab work requested earlier in the morning was to have The Princess pee in a cup. Yeah, that didn't happen. I tried and tried and tried. She wanted NOTHING to do with the darn cup. And at one point I had a very small amount collected and she decided to hold the cup herself. I thought this would be good and maybe she would actually cooperate. Nope. She dumped the little bit I had in the cup. I am sure if they still decide they want to run a urine sample we will try again, or just cath her!

Anyway, back to the appointment... The doctor came in and we went over The Princess' entire medical history. With a positive ANA screening, which was the test we did at the peds office, there is a chance she will develop Lupus. However, some people (I think she said 30%) test positive for the ANA test and never develop Lupus. Since we have other autoimmunity in the family (The Superhero), she will want to follow the Princess about every 6 months regardless of how the rest of the tests come out.

We are still waiting for the rest of the lab results. I am not even sure what tests she ran, but we will know more this week. She said we should have the results by Monday.

If all tests come back ok, then we will assume that for now The Princess does not have Lupus. If any of the tests come back positive, I am not sure what we do next exactly since I don't know what she tested for.

If The Princess does in fact have Lupus at this time, we would start a steroid treatment. The doctor is REALLY hoping we don't have to do this since the Princess is SO young. We are hoping the same.

Anyway, that is the update for today. No news is no news this time around.

I will do my best to update as soon as I get the results this week.


*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Big day tomorrow...

After my post yesterday, and lots of thinking and worrying I decided to try to get The Princess in with the Rheumatologist sooner if they had any cancellations.

I was fortunate that when I called this morning they were able to get her in tomorrow afternoon at 2pm.

So, now we have Hematology at 10am and Rheumatology at 2pm. With some shopping at the mall in between. :-)

I will update when we know more.

For now, I leave you with this sweet, sweet face.

I hate that she has to go through any more medical anything, but she does it all like it is no big deal to her.

Amazing.

(another huge THANK YOU to the Small Acts of Kindness quilt group at New Life Community Church, she is in LOVE and carries her quilt every where, even when it is 100+ degrees outside)


***And a HUGE thank you to everyone who has commented on the blog or on FB. I appreciate all the thoughts and prayers being sent for The Princess and our family. You all mean more to me than you could possibly know. ***

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Just one more thing, again?

Yep, it appears we have added ONE MORE THING to our plate. I am still trying to figure this one out.

During my back to school teacher meeting a couple of weeks ago I was explaining ITP to a co-worker. Another co-worker/friend overheard our conversation and asked if I had ever tested The Princess for Lupus. Her husband has Lupus and has several of the "issues" that The Princess has.

I brushed it off a little since we had back to school meetings and start of the school year craziness going on. Later that week I started thinking about and researching a little more into all of the "issues" The Princess deals with.

Could her low platelets be related to Lupus? Yes.

Could her odd breathing be related to Lupus? Yes.

Could her leg pain be related to Lupus? Yes.

Could her dysphagia be related to Lupus? Yes, apparently so.

Could her restlessness and seemingly lack of restful sleep for her entire life be related to Lupus? YES.

Could the fact that she FREAKS out when it is bright outside (Hello, AZ!) be related to Lupus? YES.


Even after reading all that I read, I did not think it could be possible. She seemed to have several of the "possible symptoms" of Lupus. All of those things combined point to Lupus. So, what is a worried mama to do? Take her in for blood work, of course.

Last Tuesday the 2nd I took her in to her pediatrician. I explained my new theory and since she knows us well, she did not question me asking her to test for Lupus. The nurse came in and drew the blood. We would have to wait about a week for the results.

Over the following weekend, while still waiting for the results I thought about it A LOT. We spent about an hour outside on Friday night while The Superhero had soccer camp. It was HOT. Hot is an understatement. It is August in AZ after all. The Princess DID NOT want to be outside AT ALL. She kept saying she wanted to leave. Then we went for ice cream afterward and she just sat there. It was very strange for her to just sit there. Staring into space. Not interested in her pink sherbert. Just not herself. It was weird. Photosensitivity, perhaps? Ugh.

The weekend came and went. Then it was Monday. I decided to call the peds office and see if the results were in yet. I knew it was almost a week, but not quite, so I might have to wait. The results were in. BUT, no one in the office that day could "interpret" the results until the next morning.

Ugh.

Then today both kids were acting "off" and our friend's kiddos all have strep throat. I decided to take mine in for throat swabs. Thankfully that was negative.

While we were there, I asked about her lab results. Our doctor is out of town. Our Nurse Practitioner was not there. Our normal nurse was also not there. The med student, who was working today with a different nurse pract. came in. She basically said "I have the results. They are positive. Are you seeing a rheumatologist?"

Um, NO.

"Well, we are not sure what the next steps should be. Dr. F. usually sees her and knows her history, you should just follow up with her when she gets back next week. Would you like a copy of the results?"

Um, yes, I want the results. I will call a specialist myself!

I LOVE our docs office, but really, this was the worst experience when telling me lab results today. It did not make me feel better.

Before completely losing it, I called Wendy on my way out of the office. She is really good and helping me stay focused and not freak out. :-) (Thanks, Wendy!)

I then drove over to my mom's house. When I got there I looked up the number to the PCH rheumatology office and chose a doctor, then called and made an appointment for next Tuesday.

So, now we wait. I am anxious to see what they say about her results. I am anxious to know what our next steps will be. I am doing my best to have Faith that all of this is for a reason. Today I am struggling with this and all the "why us" questions. It will get better. It has to.

I will update next week. We see the hematologist on Thursday and the Rheumatologist on Tuesday. I am sure I will more than enough to say again after both appointments.

For now, I will just go off and cry. Sigh.





*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*