6 Month Check Up

We went to see Dr. Waseem for Lilly's 6 month check up to do her blood work to check on her ANA levels. Unfortunately the nurse didn't get the blood draw on the first time and had to switch arms, but as always Lilly was a champ!

After the Blood draw and chatting with Dr. Waseem the nurse brought in some brown bagged lunches for the kids since they were so hungry and it was taking some time. The kids loved the lunches and it was so nice of them to provide them for the kids.

We will have Lilly's ANA results this week and she has been given a new medication for her tummy issues.

HAPPY 5TH BIRTHDAY!!

HAPPY BIRTHDAY LILLY!!!

Update...

Sorry for the LONG awaited update on Lilly!

On December 18, 2014 Lilly went in to Surgery to have her tonsils and adenoids removed. The Surgery went great! The right side tonsil was filled with pus and her adenoids they found twice the size of her enlarged tonsils and they were covered in pus pockets, here is the funny part, she wasn't sick... this was her normal which is pretty bad and a good reason for having the surgery done.

Recovery was very hard and long, she was in so much pain and we did what we could to make her comfortable. What worked best was vanilla ice cream, so she had that for breakfast lunch and dinner for awhile. 

She healed up within 2 weeks and is now completely normal and the result of the removal is she sleeps better at night, she doesn't need sleep diapers any more, she eats more types of food and in general eats a lot more then before, she has gained 5lbs in just a month (she hadn't gained any weight in a year) and she is no longer lethargic during the day.

Things have really improved for Lilly since the surgery, a lot of her symptoms have gone away. The ones remaining are manageable, such as leg/ joint pain. 

We also went to see Dr. Waseem and at this time she still have an un-diagnosed Auto Immune Disorder with the high ANA levels, but at this time we have to do a wait and see. Meaning we will wait 6 months and then re-test her ANA levels to see if they have changed. We watch her and if her condition worsens we go back to Dr. Waseem and testing starts again because the auto immune disorder would be getting worse and we would then be able to get a positive test. But if she is doing fine we just keep testing her every year until something happens or the ANA levels drop to normal.

Good news is we will stop seeing all these doctors and doing all these test, Lilly gets a 6 month break and she has also been cleared to go to school, so she will start Kindergarten this year in September!! 

We have to watch her closely still because she is still not able to fight off infections as well as other kids, so if she becomes sick to often we have to reevaluate the situation.

So there you have it, Lilly is doing good and is happy! 

Thank you all for your help and support! I will keep you posted on how she is doing and if anything changes.

Bye for now! Enjoy some photos below...

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!

Coming Soon...

Last week Lilly got sick with with Stomach Flu, since no one in the family or anyone who had any contact with Lilly has been sick I can only blame myself... I took her to the store with me just to grab a few things for dinner and I forgot to wipe down the shopping cart.. ugh! Two days later starting at 5am she was throwing up. 

It was so bad she was throwing up every 15 to 30 minutes, we finally had to take her to the doctor in the afternoon because she was not keeping anything down. The doctor checked to make sure she didn't have a UTI or strep and confirmed she has stomach flu and she was already showing signs of dehydration. 

We were given a prescription to stop her throwing up and told that if this didn't work we needed to take her to the ER for IV hydration. Good thing for Lilly and us, the medication worked and after 3 days she was on the mend. 

Then her big brother Logan got it! Ugh seriously!!!! Lucky he handled it well and it only lasted 12 hours and he didn't need any medication. phew!

Next week we get to see Dr. Waseem, this will be for her check up and to go over the genetic Fever panel test he ran a few months ago, I don't know much about the illness / disease that goes along with the test he performed, he told me what to start reading about, but we have had so many "it could be this" and I have researched each one that I am kinda like "Forget this, I will read it if she has it" don't take this as I don't care... look at it this way... when Lilly was having her surgery done to do the biopsy we were told "its could be this or this" one of them was cancer, lymphoma and something else.. so I started doing research and scared the crap outta myself and my husband! Each time we have done our research and prepare and scare ourselves and then we are told "Nope that's not it", so I hope you see my point.

Just before Thanksgiving Lilly will also see the GI Doctor, I am so looking forward to this, Lilly is having so much stomach pain these days, even before the stomach flu. The main thing they will be looking at is Celiac Disease, but I am sure they will run a whole bunch of fun and exciting tests as well, which will please Lilly so much (NOT) this means we will end up at Toys R Us after the Doctor appointment in our attempt to cheer her up and buy back her love (just kidding on the buy back our love part!) With our money situation its a good thing she is so into playdoh, only going to cost us a couple of bucks.

Ok so there is the wonderful update for now.. I will keep ya'll posted as always!

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..

 

 

Sick, flair ups and Ballet

Lilly got sick on August 24th with tonsillitis, it was really ruff on her and she was running very high fevers that would not go down very much with Motrin. Her pediatrician gave us some antibiotics and we talked about the documents he received from the oncologist, (all the doctors are trying to keep each other in the loop... ) But her pediatrician brought up his concern for her immune system not working well, it seems like it's become so much weaker. 

The last 3 days Lilly has had a flair up everday, by flair up I mean she is having major joint pain in her left knee and has become weak and sleepy. This is the most flair ups we have ever had so close together in one week time!

We have our up coming appointments with her pediatrician this week for a well check up for 4 year old (we missed it in July and August becuse she wasn't well or had other doctor visits),then we see the oncologist and Nerologist the end of this month.

In other news, home school my two kids is way more work then I expected!! Ugh!!

Logan is doing really well, he loves it and is learning so much. I am so glad we didn't put him back in public school!!

Lilly misses the school she loves in LA, Kids World School (I work for them from home), she dosnt want to go to any other school but that one... (Not that she can even go to school). But we do preschool from home, she is not a fan of standard teaching methods. All she ever wants to do is art, man she is an artist! So I have had to make all her lessons into an art project so she is learning the way she loves, through art! She does love music time too!

Lilly also started ballet classes, she was so excited that we finally let her do them, it's only an hour long and as long as the kids she is in class with look healthy I am willing to take the risk. She loved her first class, but was in a lot of pain with her legs and was worn out so much when she was done with the first class that she said she never wanted to go again. Lucky for me since I paid for classes until end of October she said a week later that she did want to go back. I think I will just have a little chat with her teacher and ask her to ask Lilly if she needs a break every once and awhile and maybe that will help. 

Oh she has also asked to start Gymnastics, she watched this movie last week when she needed rest... Click on the link below to see website and movie preview.. its a great movie!

An American Girl: McKenna Shoots for the Stars

This movie stars Jade Pettyjohn and Lilly was so fascinated by McKenna and all the amazing things she could do that she demanded that she just HAS to go to gymnastics!! 

She even said she wants to meet McKenna, I explained to her that it is a movie and the girl who plays McKenna is actually named Jade Pettyjohn, Lilly didn't get it at all, but she has big plans on meeting McKenna aka Jade and playing with her because she would just be so great, they can dance and sing and do gymnastics! 

I love the way my daughter thinks! 

But I just hope she dosnt find out that there is a McKenna doll.. That doll cost $500!!! 

Blood Test and 24 hr Urine test

Ok so today we did the Blood test as requested by the Neurologist and started the 24 hour urine collections that will be turned in tomorrow. We will see the Neurologist next month for the results.

Visit with the Infectious Disease Doctor

On August 13, 2014 we went and saw the Infectious Disease Doctor, it was a very long 2 hour visit with two Doctors. We went over Lilly's Medical History and it was concluded that they felt Lilly has no infectious disease. 

The Doctors felt that other then Lilly's high ANA (inflammation Levels) she is a healthy kid, she has an obvious Auto Immune Disorder, but nothing they would consider as a serious condition at this time.

They did suggest a few things...

Based on Lilly's reoccurring Strep infections and her very large tonsil we should see a ENT, we should consider having her tonsils removed to prevent her from further strep infections and also this can clear up some of her other symptoms... such as her not sleeping well at night and tummy aches.

See a GI doctor to have her stomach checked out. Look into Auto Immune disorders in the Stomach area.

See a Dermatologist about the loss of pigment on her skin on her thigh, they felt it was most likely a fungus that caused this and gave us a medicated cream to put on for the next month.  

Keep seeing the Oncologist / Hematologist  and hope he will find out what type of Auto Immune Disorder she has....

Ok so David and I are soooo done with all these doctors appointments and tests, Lilly is sooo done with all of this too. So this is what we have decided to do...

We will see the ENT (ear nose throat) Doctor and have him look over Lilly's and get his opinion. If needed we will have her tonsils remove.

We will see the GI Doctor and get his Opinion on what is going on with her tummy.

We will see the Neurologist next month to see what the results are from the Blood test and Urine Test and what his opinion is.

Finally we will see Dr. Waseem (Hematologist/ Oncologist), he has already decided to slow down and give Lilly a break, so we will do follow ups every few months. 

After all of the above, if we find an answer then GREAT!!! If not we are going to stop and give Lilly a break!! 

I am working from home and Logan and Lilly will be home schooled, David and I have worked really hard at keeping Lilly away from sick people and have been able to keep her from getting sick so often.  She is still having joint pain that we treat when she has flair ups. 

So that's where we are at this point, still no answers... frustrated that Doctors tell us something is wrong but they cant figure out what it is... 

Visit with the Cardiologist

Yesterday we took Lilly to see the cardiologist to make sure her heart is good, rheumatic fever can cause heart damage and if that is what she has had then they wanted to check for damage. Please Note ... it has not been confirmed that she had ever had rheumatic fever, it's just something the doctor is looking into as a possible diagnosis.

The cardiologist was very nice! First they did a EKG and then an ultrasound of Lilly's heart, he told us when he completed the ultrasound that she has a great heart, no signs of damage at all and does not think she has ever had rheumatic fever. So all good news!!! 

But do to eveything she is going through the do want to do a follow up in one year to make sure eveything is still doing great.

Next the infectious disease doctor and blood work... 

Lilly had to have her shirt off for the procedures and so I covered her with hearts to keep her privacy.