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.

Visit with the Neurologist

Sorry for the long delay in posting this, there was a lot of information we needed to understand before we were able to inform everyone on what the Neurologist thinks he figured out.

We saw the Neurologist on the 24th of July. He is a great Doctor and asked a lot of questions. 

We went over Lilly's medical history, every doctor she has seen and the number and types of test she has had done and the results we have.

One thing the stuck out to him was that Lilly just got over having Scarlet Fever, she was already on antibiotics for the Strep infections when it turned into Scarlet Fever. 

In Lilly's history of illness, she has had strep throat many different times during this year of her being sick, (yes its now a year we have been going through this). 

I have requested Lilly's medical records from her pediatrician to get an exact number of times she has had strep, I will let you know the number next week when I pick up the records.

The Neurologist explained to us the way strep works and the very nasty complications it can cause. He feels that Lilly's Diagnosis is Post-streptococcal complications and Rheumatic Fever.

Strep can spread to other parts of the body causing infections in

• Tonsils
• Sinuses
• Skin
• Blood
• Middle ear

Inflammatory reactions

Strep infection may lead to other inflammatory illnesses, including:

• Scarlet fever, an illness characterized by a rash
• Inflammation of the kidney (poststreptococcal glomerulonephritis)
• Rheumatic fever, a serious condition that can affect the heart, joints, nervous system and skin

Strep Throat is caused by a bacteria, more then one strain of strep can be present in the throat its called the "bandit bacteria" that are dormant and that are resistant to the medications that fight the active strain of strep. So even when the child has recovered bandit Bacteria lie ready to attack. This is why is can recur. Also because it can be Penicillin resistant, so the antibiotics she takes will not get rid of the bacteria that is making her sick.

Rheumatic Fever

Rheumatic fever is an inflammatory disease that can develop as a complication of inadequately treated strep throat or scarlet fever. Strep throat and scarlet fever are caused by an infection with group A streptococcus bacteria.
Rheumatic fever is most common in 5- to 15-year-old children, though it can develop in younger children and adults. Although strep throat is common, rheumatic fever is rare in the United States and other developed countries. However, rheumatic fever remains common in many developing nations.
Rheumatic fever can cause permanent damage to the kidneys and heart, including damaged heart valves and heart failure. Treatments can reduce tissue damage from inflammation, lessen pain and other symptoms, and prevent the recurrence of rheumatic fever.

So when you take in all this information, it sounds like we might have an answer to Lilly's health problems. It SUCKS that is all sounds so scary!!

Our Next Steps... we will not have a answer for 2 months if this is what she has or not. We have a lot more Doctors to see. Good News is there is a Treatment Program that might help Lilly (I will explain it at the bottom).

So First We have to wait 3 weeks to do some more blood work and a urine sample. We wait this long because what they are looking for my be altered by her most recent illness Scarlet Fever.

On August 4th we will see a Cardiologist, they will check out Lilly's heart and see if there is any damage to it.

On August 13th we see the Infectious Disease Doctor - Theses specialists have extensive training in all kinds of infections, including those caused by bacteria, viruses, fungi and parasites. Along with this knowledge comes a particular insight into the use of antibiotics and their potential adverse effects.

On August 15th Lilly will have Blood and Urine work done at the local lab.

I will also be running around getting all the results from all her test from that past, blood work, ultra sounds, x-rays and Biopsy results to bring back to the neurologist for a full review.

On Sept 23rd We see Dr. Waseem (Oncologist / Hemotologist) for Lilly's check up and more blood work.

On Sept 24th we will Finally go back and see the Neurologist and he will have all the results in and we hope to have an answer (man how many times have I said those words!!)

If Lilly does have Post-streptococcal complications and Rheumatic Fever, there is a Treatment plan called IVIG and it could be something that would help her. Here is some information on it Below...

What is IVIG?

A patient's quick reference to IVIG therapy.

Q: What is IVIG? A: IVIG stands for intravenous immune globulin; it is a sterile solution of concentrated antibodies extracted from healthy donors which is administered into a vein. IVIG is used to treat disorders of the immune system or to boost immune response to serious illness, and to treat immuno-suppressed recipients of bone marrow transplants.1 Antibodies are responsible for defending our bodies from pathogens, such as viruses and bacteria. Q: How is IVIG made? A: There is a highly specialized and lengthy process used to manufacture IVIG. It begins in blood centers across the country where tens of thousands of healthy individuals donate their plasma (the portion of the blood where the immune globulins and other blood proteins are contained). The plasma from all of these individuals is then pooled together, and then chemically treated to isolate the immune globulins and remove any other blood proteins or blood-borne pathogens. The end result is a highly purified immune globulin preparation that is then packaged and ready to be infused.2 Q: Is IVIG safe? A: Yes! Since IVIG is derived from human plasma, theoretically there is a risk of viral transmission; however, every possible precaution and step is taken to ensure patient safety. The blood centers are strictly monitored and regulated by the FDA and the manufacturers of IVIG, as well as the individual donors, undergo an in-depth screening process to determine that they have not been exposed to certain pathogens, such as the HIV or hepatitis virus. Furthermore, during the manufacturing process, viral inactivation and removal steps are taken as an extra precaution.3 Q: How does IVIG work? A: It is unclear as to exactly how IVIG works within the body. For patients who are unable to produce their own antibodies, IVIG is used to temporarily provide these patients with the antibodies they need to ward off infection. In patients with autoimmune diseases, or other conditions where the body's immune system is not functioning as it should, IVIG can help regulate an overactive immune system by signaling it to slow down or stop inflammatory processes.4 It has also been hypothesized that IVIG might redirect the out-of-control immune system from the body's tissues by serving as a target for the auto-antibodies. While it is possible to debate the mechanisms by which IVIG successfully treats diseases, there is no denying its efficacy; IVIG has significantly improved the quality of life for many individuals.5 Q: Why do I have to have regular infusions? A: IVIG does not affect your immune systems ability to produce immune globulins; it simply increases the antibody level within your body. Antibodies whether those produced naturally by your body or those infused in the form of IVIG are eventually metabolized and eliminated by your body, usually in about 3-4 weeks. Regular infusions are necessary to maintain immune globulin levels within the desired range.2 Q: What kinds of side effects can I expect? A: The most common side effects include headache, nausea, low-grade fever, chills, rash, neck/back stiffness, and fatigue. Generally, these side effects are mild and tolerable and most often, they can be alleviated by decreasing the rate of infusion. More serious side effects, such as allergic reactions, are rare, but have been reported. Should you develop an allergic reaction, your health care providers are sufficiently trained to handle this. Do not hesitate to contact your physician if your side effects are severe or persistent. It is possible to reduce the severity of the side effects associated with IVIG infusions. Your physician may suggest premedication with acetaminophen or antihistamines; corticosteroids are also an option your doctor might conside.2 It is also important to make sure that you are sufficiently hydrated before your infusions. Make sure that you are drinking plenty of water for several days before your infusion.6 Q: Are there different brands of IVIG? How are they different? A: Currently there are 11 brands of IVIG available in the United States. They are all essentially therapeutically equivalent, however they do differ from each other in terms of sugar, sodium, and antibody content, as well as the presence of preservatives or latex. Your physician will examine all of these factors and identify the best brand for you.7

OK Everyone, as you can see it is a lot of information... As always I will keep you all posted on Lilly and how she is doing and what information we find along the way. Thank you all for your support!! 

Scar from Rash...

Lilly had a small rash that started around November / December ?? Anyways it just got bigger and bigger and we were given medication creams to put on it and it just kept getting worse and spreading down to her knee and up to her hip and butt. Well about a month ago the rash just cleared up and left this strange scar. Anyone have any ideas on what happened here?

Scarlet Fever...

I rushed Lilly back to the doctor today because David (daddy) found a rash around her neck, when I checked further it was also on her chest and tummy! 

Doctor check her out and she has scarlet fever... Plus a bladder infection!! Ugh!!

Poor kid just needs a break!!

Lilly's scar

While we were at the doctors for Lilly being sick I asked the doctor about her sterstitch, it was supposed to fall off after 10 days and it has been a month and has loosened, but not come off. The doctor said they would remove it for us. 

It was really easy, the nurse soaked it in something and just pealed it right off.

Her neck is all healed up and her scar looks great, it will not be that noticeable. 

To the doctors we go...

Lilly woke up the other night in a lot of pain, her throat hurt a lot and she was running a fever. That morning she woke up still in pain, running a fever and started vomiting. I took her and her brother Logan to Urgent Care to find out what was going on.

When the nurse took her vitals I was informed that she had a fever of 104, I had given Lilly Tylenol just 2 hours earlier so the nurse got an ice pack to cool her down.

The doctor checked Lilly out and found she has a really bad throat infection, prescribed antibiotics.

When we got to the pharmacy to pick up the perscription Lilly started vomiting again, lucky for me I was prepared and had a bowl with me.

Once we got home I have Lilly Motrion and her antibiotic and she went straight to sleep and slept for over 2 hours.

I monitored Lilly's temp, I got it down to 100. 

After she was awake again she was finally able to eat a little broth and some pediapop.

We had a ruff night last night of fever and pain, but this morning she is already showing lots of improvement! She had a slice of toast for breakfast and wants to play playdoh. So far no fevers! Yeah!

Happy 4th Birthday Lilly

HAPPY 4TH BIRTHDAY LILLY!!!!

Results of biopsy so far...

On June 24th we took Lilly in to see Dr. Waseem, he went over the results that he had in from the biopsy so far (more to come in over the next 2 weeks). 

So far everything came back normal, the lymph nodes are inflamed and quiet large, but there is nothing in the test results to show an infection, virus, or cancer... Nothing.. No answers at all! 

All the doctors can tell us is she has high ANA levels (high inflammation in her body) that indicates to an Auto Immune Disorder, this is causing her lymph nodes to become inflamed and enlarged, chronic illness and her leg and stomach pains are most likely from the high inflammation as well. 

She will continue to have blood tests done every 4 months for 1 year to keep an eye on her ANA levels and make sure all her organs are functioning as normal. Then after a year she will have blood test every 6 months to keep an eye on her. 

They took blood on this last visit with Dr. Waseem to check her current ANA levels and also see if she might have crohn's, colitis or celiac disease. If this comes back positive she will see a GI specialist and have further testing done.

She also has a neurologist appointment in July, to test her muscles.

So at this point we are just to continue with physical therapy which has been helping with Lilly's leg pain and strength. We are to keep monitoring Lilly's temp and symptoms, her good days and bad and report any worsening or new issues. 

The good thing that has happened since we started to see Dr. Waseem, we were made aware that Lilly's condition caused her to get sick often because when exposed to illness she is unable to fight it off. So we took Lilly out of pre-school, keep her away from anyone sick and try to keep her germ free. Because of this Lilly has not been sick as much as she was in the past. She has not had to be on antibiotics for a few months. In the past she was in the doctors 2 times a month sick with something. I don't know what this means for us in the future... Logan goes back to public school in September and will be exposed and can bring home germs (need to decontamination until in our entry way, lol) and Kindergarten is just a few years away.. I guess we will find out when we get closer to that time.

Other things we are doing naturally from home to help, Our family went Organic Vegan and that is going great, with the help of my friend, neighbor and fellow vegan Stevie.. I am learning how best to feed our family. Also our long time friend Zach who is Raw Vegan has provided us with advice, tinctures and has guided us towards food that will help! So far none of this has reduced her inflammation levels yet, but we can only hope that putting in the best foods into her body will help and we will wait and see, sometimes it takes time. 

We are clean freaks and make sure that the house is a clean as possible to prevent molds and bacterial growth, I make our own cleaners, we do not allow chemicals in the house only all natural home made.

I have made contact with a mold specialist and waiting to hear back from them about doing an inspection of our home to see if there is any hidden molds in the house that can be causing this, it's $500 for the inspection and testing, but if our apartment is making her sick it's worth spending the money. 

Thanks to all of you, my friends, this blog, Facebook page and a story about Lilly published on mommy page, we have been contacted by 5 family's dealing with almost exactly as what Lilly is going through, none of them have answers either. One woman named Steph who was introduced to me by a mutual friend has been dealing with this for 2 years with her daughter Hayden. It is great to speak to these other family's, comparing notes and talking about sharing information and results from our doctors to see if there is something similar, maybe sharing info will help figure out what these kids have in common and why they are all sick.

My husband and I are not giving up on getting Lilly better, we will continue to look for answers!

Thank you all for your kind words,  support and the donations we received helping to cover our expenses! 

Please keep following as I will keep updating!

NOT CANCER!!!!

After days of waiting to find out, we got word from the Surgeon's office this afternoon the Lilly does NOT have cancer!!!!

There are still lots of test being run and we should have more information when we see the surgeon on June 30th!

David and I are so happy right now to know that cancer is off the table!

No test results yet...

We were told that we might have the first of the test results in today, I called the surgeons office, but no such luck! The nurse said she will call me when the results start to come in, but can not give a time line of when. 

Anyways, I was checking out Lilly's neck from the surgery, we have to keep it clean and check for infections and what not and it's looking good, you can see she has some bruising. But it is healing well. The stitches will come off in 10 to 14 days. They are called Steristrips, so she won't have a lot of scaring.