Another surgery

Ok so tomorrow on the 18th  Lilly will go in to surgery to have her tonsils and adenoids removed, it will be a 2 hour surgery. 

4 of her doctors agree this is something that needs to be done. It should help with her sleep apnea, and therefor she will not be lethargic during the day, it will also help with the reoccurring throat infections and improve her chances of going back to school and being able to be less quarantined.

There is a chance that she will have to stay over night in the hospital due to her age, but they are pretty confident she will go home after the surgery is done.

Recovery is 2 to 3 weeks, we have special instructions on pain management and what she can and can not eat. Lilly is excited about this actually because the doctor told her she will need to eat a lot of ice pops, icecream and cool drinks.

About 4 weeks after the surgery she will see Dr. Waseem and have some blood work done, check her ANA levels and see how her symptoms are. 

Positive thoughts for miss Lilly tomorrow!!

A visit with Dr. Waseem

On November 26, 2014 we saw Dr. Waseem. I have to tell you that the night before our visit Lilly wrote a letter to Dr. Waseem, she wouldn't tell us what it said and then she gathered two candies for him and placed them in a little basket to give to him at her visit. 

When we saw him, Lilly let him know she had something for him and gave him his gift and tried to read him the letter she wrote, but forgot what she had written. It was all so very sweet, she really enjoys having him as her doctor. He was so pleased with the letter and gift and gave her a hug and high five! 

When we talked I he explained that he was in contact with Dr. Yu the ENT and that Dr. Yu agreed that Lilly's tonsils needed to be removed and much improvement would happen, but he had concerns about her getting a blood clot or bleeding out and other things due to her condition. So they agreed that Dr. Waseem will do another blood test to cover this issues and more and if all looks good Lilly will be having her tonsils removed before Christmas. I will be honest, the benefits of having this done are huge, but I am scared at the same time. But they are making sure everything will be fine for this to happen, it won't happen if they find one thing off and that's good to know.

Dr. Waseem also let us know that once the surgery is done will will wait a few months and have her checked out again and a new blood draw done and see if there is improvement in her condition.

The High ANA and auto immune disorder won't just disappear because of this surgery, but it might help some of the symptoms she has. 

After that we will be doing 6 month or yearly visits to have her blood draw, they will continue to monitor her ANA levels because one of two things will happen... It will either go away or become full blown into something like lupus or other worse things I don't want to think about.

We are still waiting on the Fever Blood panel results, it might take another month since it's also genetic testing as well. All the other prior blood work and pee test came back normal. That's good!

So that's where we stand at this time, hopeful more answers to come and the GI doc might provide us with other info!

Thanks for following!

GI doc appointment

On November 25th we went to the GI doctors, wow another great doctor! 

He said he will get Lilly tummy pain free and no more nausea! 

But first we have to do an xray to see if the tummy pain is due to being blocked up.

Also blood test for Celica Desiease which he agreed to combine with Lilly's blood test tomorrow for the post surgery to have tonsils removed, that's great!!

Also the yucky part, 4 stool samples to be taken, oh to be a mommy, at least I am used to dealing with poop, all though since my kids are 7 and 4 it has been awhile... But my nephew who is 2 dis get poop on me just last week when I was watching him... Little bugger! Lol

The results will be in next week and the Dr. and I will talk then about what our next plan of action will be based on the results..

Other news, Lilly is starting to come down with something, not sure what yet.. Running nose, cough and mild fever. I hope it's just a cold, but even those are harder on Lilly then other kids.

I hope you all had a great Thanksgiving! 

I want to say I am Thankful for so many things...

My wonderful husband who works his butt off to take care of us and that he is such an amazing father!!

My two amazing, funny kids who make everyday a new adventure!

My family who has helped us so much! Supported us and given so much! 

My friends who have supported us and alway ask about Lilly.

The amazing Doctors that have been looking after Lilly during this long long journey, espically Dr. Waseem who has gone above and beyond for Lilly and who Lilly considers a friend. And David Buldge who was the one to realize something was seriously wrong with Lilly and pushed to get her to a specialist when another doctor didn't agree, he has been a great pediatrician and always takes his time to explain in detail what we are facing.

And I am thankful to have all of you who have been following Lilly's ups and downs, the emails of support and advice from people I have never met, but feel very close to! Thank you for your prayers, positive thoughts and kind words!