Halloween

Lilly at the Ren Fair

We took Lilly and her brother to the Ren Fair, it was such a nice treat to go out and do something fun!!

 Thanks to my friend PJ pictured on the left side of the photo, the kids were able to meet Queen Elizabeth! Lilly was so thrilled by this, it was all she talked about for days.

 Lilly, Logan, Scarlet and Gwen

 Lilly is a sword fight with a Night and she won!

 Logan is wounded, but still fighting!

Lilly came in and saved everyone, she was the hero!

Seriously!!

Yesterday we took Lily to see Dr. Waseem and have her blood drawn, the test that is being performed is periodic fever panel, ANA levels, HgA1C for diabetes and took urine as well. She did wonderful with the blood draws usual we are always so proud of her.

After that we had a sleep study appointment, this is just the check up and review of history before the sleep study is done. I spoke with the doctor about how lethargic she is during the day that she tosses and turns during the nights and doesn't seem to get a good rest.

He then performed an examination of Lilly  and upon looking in her mouth and checking out her throat he proclaimed he knew why she is not sleeping well, he stated that her tonsils are large so large that they are actually touching each other and need to be removed immediately. Once her tonsils are removed he said that all her symptoms would go away and should be much much better!! He said he didn't even need to do the sleep study to know that she has sleep apnea due to her tonsils being so enlarged.

I went on to explain to him that we had seen the ENT the day before, and the ENT will not remove her tonsils due to her undiagnosed autoimmune disorder and the risks. The sleep specialist said he would contact the ENT and tell him this must be done, her health is at too great a risk to not have it done, she could stop breathing permanently, she can have kidney complications and so on, he was very adamant that she must have them taken out and that she will improve so fast. 

So this is what we are facing now, ENT says its to risky and Sleep doc says its too risky not to!! Ugh seriously!!

David and I have decided to talk to Dr. Waseem and ask his thoughts and ask him to talk to the ENT so he can have a complete understanding of Lilly's condition and then consider the risks.

ENT visit

We saw the ENT (ear, nose and throat) doctor today, he was a very nice man.

I went over Lilly's complete medical history starting from over a year ago when she got her first throat infection and started getting the lumps in her lymph nodes. We reviewed the antibiotic's that she has taken during this year and were told that she might be immune to amoxicillin now because she has been prescribed it so many times for her throat infections.

Due to the number of throat infection she has had she does qualify to have her tonsils removed, but at this time the ENT doc will not remove her tonsils.

The reason the doctor will not remove her tonsils at this time is because 1. She has an undiagnosed autoimmune disorder that could cause her to have difficulty healing from the procedure and 2. Due to her condition she is at a higher risk of complications during surgery and the possibility of death.

So we agreed with the doctor that she will not have her tonsils removed until we have a diagnosis and then we can discuss the risks of doing the procedure , if it will even be needed after we find out what's going on with her.

The ENT doc did ask us to have Lilly tested for diabetes and lupus. I let him

Know that she has been tested for lupus and has come back negative, but I had no idea if she has been tested for diabetes so I will ask her doctor to test her.

The ENT doctor also referred us to a immunologist, to have her looked over and see if the immunologist can find an answer to what's going on with her. Oh yeah another doctor visit.. Wee fun!!

Tomorrow we are taking Lilly to Dr. Waseems office to have blood work done, he is testing her for a Periodic fever Syndrome, as well as checking her ANA and after I emailed him about what the ENT said he informed me she has test negative for lupus (which I knew) and that they have been testing her glucose all this time and it has been fine, but just to be sure he will do HgA1C test that will show if she has been having diabetes issues. It was very nice of him to do that just to double check. 

After that we head over to the Sleep study office to get all our pre-sleep study stuff in order and set a date to do the sleep study. Should be a very busy day... 

Oh and it's My husband David and I 10 year anniversary, let hope we (just him and I) will get a chance to go out and celebrate! lol!! We have been together for 15 years and married for 10, it such an amazing thing, I love him more and more everyday!

All of us waiting over an hour to see the ENT!! UGH!!

Recent Follow ups and more Doctors

Ok sorry for the delay in updating everyone... we have been very busy!

On Sept 23rd we saw Dr. Waseem, thankfully Lilly didn't have to have any blood work done. We went over her recent visits to the Cardiologist and Infectious Disease Doc and the results, we talked about Lilly getting sick again and the fact that she is having chronic stomach pain that is not gotten any better with the medications he has prescribed. Her new sensitivity to light that is causing headaches and that the Infectious Disease Doctor suggested we should consider having Lilly's tonsils removed.

Dr. Waseem agreed that Lilly should see an ENT (Ear, Nose, Throat Doctor) and also asked us to see an eye doctor to see if the inflammation in her body is damaging her eyes and he also wants her to see a GI Doc about her tummy as he feels that maybe she has Celiac Disease (where your body gets sick from Gluten), he thinks this is a good possibility and she just presented differently. He will see Lilly again in November and he will do blood work then to see how her ANA levels are doing.

The next day Sept 24th we saw the Neurologist, we went over all the results and he found that there is nothing to indicate a Strep Throat complication. He wants to have a sleep study done on Lilly to see why she is so lethargic. He will also continue monitoring Lilly,we will see him again in December. If Lilly gets worse he would like to start her on Steroids (low dose) to reduce the inflammation in her body, if that isn't working then he wants to do the IVIG (explained in an earlier post), but only if she is worse and steroids don't work. 

So we are going to see the ENT on October 8th, Sleep Study Doc on October 9th, GI Doc on November 25th (on a waiting list for any cancellations to get her in sooner.

We saw the eye Doc on Sept 30th and everything looks great, she has a condition where her eyes are very sensitive to light, the treatment is very dark sunglasses, LOL hey that's easy... But otherwise she has great vision and no problems. She will need a follow up in 6 months because of her high inflammation levels they want to monitor her.

Photos from her Eye check up..