I hope you are all doing well! I think about all of you everyday!

Nicole has not been doing well. Alot has been happening with the school, insurance company, SS and anyone that tries to interfere with her progress.

It is surely a full-time job.

We did finally get an IEP three weeks ago. Nicole is still unable to attend school or participate in home tutoring at this time.

The insurance co. is still jerking us around. They sure don't make things any easier!

SS disability denied Nicole saying, Nicole's Dad makes too much money as isn't disabled himself. Therefore, Nicole isn't elligable for diability benefits. I intend to keep applying until they approve her. I even told them I was more concerned with getting better medical than actual money. I just want her to get the care she needs and deserves.

She isn't doing so good. She hasn't been in school for the past two years. She has lost all opf her friends. She has put on fifty pounds. She has stretch marks from the weight gain. She is still has much difficulty with walking. She still has seizures and tremors. Still in constant pain from her headache and joint pain. She has been suufreing with anxiety, paranoia, depression and has resently suffering with incontinence. She has been being treated for a very serious yeast infection from the prolonged antibipotics.

This poor baby has suffered so much with this horrible disease. She is constantly asking-begging,"God" to help her. She says, "Why I am just twelve years old? She says that it probably so she can help others when she gets better.She also Godkeeps giving her buckets of strength, when her bucket is empty he fills it up again! She is thankful for that.

It has been horrible watching her go through all of this. It breaks my heart. I am hanging on by a thread.

However,we did get some good news. Nicole started working with a child Psychologist this past week. The Psychologist was outraged that we were having so much difficulty with getting her the care she needs and is doing everything she can to help us.

They are working to get Nicole her IV Antibiotics. It may happen as soon as this week. Her PICC line could go in as early as today. Nicole will also be getting a nurse that will come out everyday. She is going to get a mentor to help get her a more positive attitude. The family will also be receiving therapy. We will also have an advocate that will work to get us what is needed for Nicole.

They are so upset that things have gotten so bad and we haven't been able to get Nicole the care she deserves.

Things have gotten so bad Nicole has been unable to bathe, sleep, eat and just function normally. NORMAL, "What's that!" There is no normal anymore for us. I only pray that things get better.

It has become a constant struggle. I have faith that we will get through all of this. We will not give up!

I don't have much time,I am waiting for the doctor to arrange for Nicole's PICC line to be put in today. I had a few minutes and wanted you all to know how things were going.

You all mean so much to our family. You have helped us so much. I hope you are all well and we wish you all the very best!!!

I will post again. apologize again for not posting often.I hope you understand. I haven't forgotten you. I am just extremly busy with Nicole.

Thank you all for your support, prayers and for just being here.

God bless you all!!

Love,
Monique

It is so sad that 25 years after they found this disease, that children still suffer as Nicole has.

Makes me fumin mad!

I am so glad that you are getting advocate support now, in many ways. It will give you a breather for a little while. My heartfelt prayers are with you guys. We have been there, and know what you are going through.

The "stretch marks" are consistent with Bartonella. Has Dr. J been notified of this or has she been tested? This too could be indicated by the pain she is in.

Please check for Bartonella. By itself its fairly benign, but when it is mixed with lyme and other TBIs then its a really nasty thing. So...make sure that Bartonella is addressed.

Lots of hugs and love to you

"No" Thank you for being here for us.

I wasn't aware of the Bartonella information. I will be talking to Dr. Jones Friday I will surely be addressing that.

I agree, it furiates me that more isn't being done. It surely isn't for lack of trying. So many are trying to make changes, but somehow they just aren't being heard completely.

What is even sadder is that so many truly don't want to understand this disease. Until it strikes their family member or friend. Or possibly themselves. Only then will they truly understand the effects of this horrible disease or even care! THAT'S SAD

Nicole's PICC line didn't go in. Insurance will only pay for PICC line, Medicine and Nurse. Not for any durable Medical Equipment; which would be the equipment needed to do the actual infusion. Such as the tubing and equipment needed to flush the lines ect...

How would we do the infusion without the tubing, what a joke!

You better believe I am arguing that one!!!!

The insurance co. is constantly preventing us from getting Nicole the care she needs and deserves.

Now we have to wait until we can get approval. Which they are still denying at this point.

It's been a long road, but I will not give up. I surely will not allow Nicole to give up either. Even though each day it gets harder and harder for her.

I am so thankful for all of the wonderful people I have met here. I don't think I could have made it this far without all of you. I need as much support as I can get right now! My heart is broken as I continue watch my child suffer with this horrible nasty disease.

Thank you so much for caring!

Love,
Monique

Thank you for taking what little time you have to let us know what has been happening with all of you.

My most healtfelt prayers are flying your way. Please know that it WILL get better, even though right now, it seems as if there is no end in sight.

Keep that fighting spirit alive, but also, keep remembering to take care of yourself as well, OK?

Looks as if Nicole has inherited your wonderful faith...you can be so very proud of that gift that you so lovingly shared with her.

Please let her know that we are all still pulling for her returned health...and that we will not give up on her either!

My very best to you and yor precious ones.
Much love,
Melanie

So sorry to hear about everything you & Nicole have had to deal with lately.
Is there anything we can do to help you?

Every time I hear stories like this I can't believe that the USA has money to take care of business all over the world and has such a disgusting health care system.It really is embarrassing to such a 'great nation'.I have all my IV's for nothing.Medication,nurses coming to the house,pic lines in etc etc.I have had to do a lot of convincing because noone knows anything about lyme over her in Australia but I am so far winning.If you have something wrong with you over her it costs you nothing.I hope your politicians do something to bring your country in line with other western nations.It really is rediculous!!!!!

Take care and hope things work out.

I was getting ready to tell you all the horrible stuff I have been going through with the insurance company, but I can now instead give you some good news.

I am sure you all are going through enough already yourselves anyway.

I just got a phone call from Nicole's Nurse. After being on the phone constantly for the past two days with everyone from the insurance company to the State of NJ Goverment Officials.

I even threatened to be on the 6:00 News tonight and go public with this mess.

They put the approval for Nicole's IV, Meds ect... through JUST NOW!!!!!!!!!
She starts on Monday and Friday she will get her PICC line in.

I am so happy for my child, words cannot describe what I am feeling at this minute!!!! She now has the opportunity to get well. Something that has been deprived her for many years. I pray this works.

I can't stop crying I am so happy. For once happy tears!

I am so glad to finally be able to share some happy news with all of you. I only pray it continues.

Thank you all for your prayers and kindness it is so very much appreciated!!!!

I need to go for now, but I will post again soon.

You and Nicole are always in my thoughts. I truly understand the constant ups and downs, but I'm sooooo happy you finally got some good news! With patience there will be more and more of the good moments.

Please tell Nicole to envision herself in a cocoon, just resting and waiting to emerge as a healthy and vibrant butterfly.
It will happen!!! Her strength amazes and inspires me.

I'm sending lots of love and healing prayers your way

I love SunRa's suggestion that Nicole envision herslf emerging from the cocoon as a beautiful, healthy butterfly.

Give Nicole a hug from all her friends at LymeNet.
When you have a few minutes, give us updates on how y'all are doing.

Tell Nicole that we are all pulling for her. The sky's the limit!

Thank you for bringing us up to date!

so happy you're on you're way now..don't forget the bart..it'll stop her from getting better from the lyme if she has it...dr. jones needs to knoow this!!!

i'll keep her in my prayers...