Thursday, July 30, 2009

Two More Mom's with Peter's Kids

Just this past week I was contacted by two more mom's who have a child with Peter's Anomaly. I cannot believe it, it's like so many pieces to this crazy puzzle are falling into place. Both mom's found me on facebook and then read my blog. In doing so they realized that their situations are so similar to mine and none of us are alone anymore.

One mom, Catherine, is from the UK and flys here to the United States to have her son seen by a doctor in Rochester NY. Her son Bobby is 5 months old and had KPros (synthetic corneas) implanted to allow him to see. That was last week, and while she was here she found me on facebook! I can't wait to get to know her and all about her family!

Another mom, Yvonne, is from Florida and also brings her 5 year old son Sam up to Rochester NY to see that very same doctor. He originally had donor transplants like Emily has, but they rejected quickly, so they turned to this doctor (Dr. Aquavella) and their son now has the KPros implants as well. Sam has Peters' Plus, which means he has other health and developmental issues in addition to the corneal problems.

I called and spoke with Yvonne last night for over 3 and 1/2 hours and it was wonderful to talk to another mom who has been in my shoes and can completely relate to EVERYTHING I have been through. We talked and laughed for so long and have so much in common. By the end of the conversation (which was after midnight) I felt like I had known her for years! Yvonne has a blog as well and I hope you will check it out and learn about her little boy and his struggle. Her blog address is:

I am so excited that I'm making these connections, it's so important to me and I'm sure they feel the same way too. We know exactly where each other has been and how each other is feeling. This is going to be a rough ride, but we are here for each other now and that is a blessing!

Appointment With Dr.Zaidman 7/27/09

Emily had a doctors appointment this past Monday with Dr. Zaidman. I was nervous about it because after her allergic reaction to the new eye drops I wasn't sure what he was going to say or do. After briefly meeting with a resident doctor and going over her medications and the specifics of the reaction she had, we were moved into the back waiting area. Once Dr. Zaidman called us into an exam room he brought another resident doctor in with him. She had never seen Emily before and he was telling her about her latest surgery and how he hopes to do a partial transplant on her right eye to replace a few layers of the cornea where scar tissue has formed.

She is now 7.5 weeks post-op and after examining her, he told me that the cornea looks very good and the lens implant is still in a good position. We talked about her reaction to the new medicine and he said that if Dr. Kane really felt it was necessary for her to have the surgery to implant the second tube, then he would have to go with what he felt was best. But he was hoping to try one more medication before resorting to the surgery...(the Pilocarpine that she is now on).

The resident was curious about how well she could see, and at this point Emily had already gotten down off my lap and was walking around the room. What Dr. Z said next hit me like a ton of bricks..."well obviously she is seeing, and she is doing remarkably well considering what she has been through". My heart just about jumped out of my chest! For him to say that really made me feel as though he was truly impressed with how well she is doing and how far she has come. If he thinks she's doing "remarkably well"...that's music to my ears. Despite the cornea rejecting and the constant battle with Glaucoma, she is still prevailing..she is a fighter for sure! I will never give up on her and I know she will never give up on herself. For a 21 month old little girl, she sure has more strength than any adult I know...

She has become a little bit "sassy" over the last couple of weeks, since she learned how to say NO! She had already (on her own) learned how to cross her arms when she is mad or upset and that combined with 'NO' is just setting the stage for her to tell everyone exactly how it is! She will not settle...she will not back down...she will fight for what she wants until she gets it. She WILL be able to see, she WILL do everything a child with 'normal' vision can do...she will prove everyone wrong...and in the process teach us as adults a very valuable lesson in courage.

I love you baby are such an inspiration!

Wednesday, July 29, 2009

Trying Yet ANOTHER Medication

I called Dr. Kane yesterday to try and find out if they had any luck scheduling Emily's Glaucoma surgery, expecting to hear "yes, it will be Aug. ____. Instead Dr. Kane told me he has consulted with Dr. Zaidman again and he wants to try another medication before doing the surgery. I guess thats a good thing, but I just feel like it's delaying the inevitable again. Time is something she doesn't have, and neither do I. School is starting again in about a month and I know all of this is going to land in my lap just as the boys start getting into their school routines. It's bad enough that she has been scheduled for surgery to take the transplant stitches out on Sept 2nd, the day before Matthew starts school. I want to reschedule it so bad because I want to spend that LAST day of summer with the boys and really have fun with them. No one consulted me on the date and I just feel like at this point does one more week really matter? They've been in already for almost 2 months...I might just call tomorrow and tell them that I have to change it. My family needs me that day.

Anyway, Dr. Kane called in Pilocarpine, which she has already been on once before. But this time it's only 1% instead of 2%...not sure what the difference is, but its too bad we can't use the 2% because I already have a whole bottle...

More money out the window...

We have to give this to her 4 times a day (in addition to everything else) and he wants to see her on Monday to check her pressure. God willing this will work, we can postpone the surgery...but I doubt it.

Still Searching For Help

A month or so ago, our social worker started checking into a program or 'fund' that might help reduce the cost of Emily's prescription eye medications. I spoke to her this morning and not one single medication qualifies for or is part of the program. What the hell??? Can't we catch any kind of break here?

I've exhausted just about every avenue that I can think of for financial assistance for Emily's medical needs/expenses. We don't qualify for reason X, Y or Z....

My next (and probably last) option is to look into the Catastrophic Illness in Children Relief Fund.

What is the Catastrophic Illness in Children Relief Fund?

The Catastrophic Illness in Children Relief Fund is a financial assistance program for New Jersey Families whose children have an illness or condition otherwise uncovered by insurance, State or Federal programs, or other source, such as fundraising. The Fund is intended to assist in preserving a family's ability to cope with the responsibilities which accompany a child's significant health problems.

To be Eligible, In any prior, consecutive, 12 month period, dating back to 1988, eligible expenses must exceed 10% of the family's income.

In speaking this morning with Andrea, our early intervention district coordinator, she advised me to look into this as an option for Emily. Now that we have over 12 months in previous medical expenses for her, we can apply. But I'm sure we'll have to furnish a world of paperwork, receipts, cancelled checks, bills prove what we've spent out of pocket in those 12 months. It won't be that difficult since I have everything organized fairly well, but it's just more red tape we're going to have to cut through. And who knows how quickly we'd get reimbursed if we did qualify and they chose us. It could be MONTHS before we get any answer or see any kind of money...and that's if we meet the minimum 10% threshold.

The one good thing is that we can apply for every 12 consecutive months since you are applying for reimbursement of what you've already paid, so we will shortly be able to apply for the last 2 years. I called today to request the application so we'll see what happens.

Thursday, July 23, 2009

My Breaking Point

Where is my breaking point? I don’t know if I’ve been there already or if it’s still out there somewhere. Maybe I am there right now, who knows. I’m tired of all the twist and turns of this roller coaster and I want to get off the ride. I’ve run out of tickets so why can’t my turn be over? Just when you think you have gotten to the point where it’s going to slow down and maybe even come to a stop, the track either drops out from underneath you or you get whiplash from the sharp turn it takes.

I am trying to be strong. I am TRYING to be strong. Strong for my daughter, strong for my family, strong for my husband…but what happens when I need someone to be strong for me? I can only be strong for them when I, myself am strong. Right now I feel anything but strong. I feel like I am falling apart.

Everyday is a struggle. I know everyone has bad days, but I feel like I have more bad than good lately. Normally I am pretty even keeled about Emily’s condition, only getting really emotional when something major is happening like a surgery or EUA. Today I’ve broken down multiple times and found myself asking why I can’t seem to keep it together. I still haven’t figured out the answer to that.

I am so tired of seeing her suffer. She has been through so much and I just can’t stand to think about what her future holds.

Maybe I've been to the brink of my breaking point before. Are we allowed to reach that point and then recover from it only to start heading towards it again? Like a rollercoaster... you get to the bottom of the hill only to start climbing towards the top of the next one...

Allergic Reaction To New Eye Drops

Before we left for vacation, I got a phone call from Dr. Zaidman’s office saying that he wanted her to start a new eye drop for the Glaucoma, something called Phospholine Iodide. Lets just say we went to the ends of the earth to find this medicine and even had it shipped overnight from the pharmacy at home to where we were staying at the shore. Today is the third day she’s been using it and I recognized the signs almost right away… she was having an allergic reaction to it. Her eyes are slightly bloodshot, her eyelids are red and puffy, she has been unhappy for most of the past 3 days and the only time she really is not crying or cranky is when she is sleeping. She slept all of Tuesday afternoon and then was up two or three times in the middle of the night crying. Yesterday she took a morning nap and fell asleep at the beach for at least an hour or more. That is just not like her.

This is exactly how she acted when she had that reaction to the ointment we had mixed up at the compounding pharmacy last year sometime. I finally called Dr. Zaidman and Dr. Kane this afternoon and they both agreed that we should stop giving her the drops. All the shit we went through to get that stupid medicine and she’s allergic to it???? It figures. But now the reality of her needing the surgery for the second valve is at the forefront of my mind again. Not that it ever really left, but at least for a little while I wasn’t really thinking about it as much.

We started this fight a year ago…we were on vacation anticipating that Emily would need surgery to implant a valve in her eyes to control her eye pressure. Six surgeries and 2 EUA’s later, the Glaucoma is still winning. It took her vision once already by causing the rejection of her first cornea transplant in her left eye. Now that she has had a second transplant and a new chance to see, we hope that we can finally find the right combination of treatments for her and once and for all get her pressure lowered and keep it there. Here we are one year later, again on vacation trying to enjoy time together as a family. Instead of being able to shut out all of what is happening to us/her, I have spent most of my vacation agonizing over yet another 3 surgeries she will need to have in the coming months. By the time she is 2 years old, she will have had 15 major surgeries. I just can’t seem to get that number out of my head.

Sunday, July 12, 2009

Finding New Connections

Within the last week I have been contacted by a few other mom's who are in similar situations as I am. Just yesterday I received a friend request on Facebook from a mom who found me through a Congenital Glaucoma group. Not only does her son have Glaucoma, but she also lives in NJ and sees the same doctors as Emily does! Her son is 2 years old and is waiting for a cornea transplant with Dr. Zaidman. Plus, after she had already found me on Facebook, she was told about an article in the paper about a little girl with eye problems. She read it and realized that it was Emmy's story! I had goosebumps reading her email as she described all the similarities between her son and Emmy, and how she came to find me. Truly amazing! I'm sure her and I will form a great friendship, we are already connected in such a powerful way.

Then last night I received an email from another mom who said she sat and read this entire blog! Her daughter also has a visual impairment and she wanted to let me know I am not alone. She gave me the address to her blog as well. I am so touched by all these new connections with other parents, this was the reason I started this blog in the first place. I had tears in my eyes as I read some of the posts...I truly wasn't alone. There are other people out there who are going through the exact same thing as I am. They are finding me and I am finding them.

Katie's blog address is:
Maddy News -

In reading her blog I also came across another blog about a baby struggling with a visual impairment. I started to scan through some of the posts and found out that this little girl, named Lilah also has Peter's Anomaly. I was again in tears reading some of the posts.

Her blog address is:
Lilah's Hope -

Please check them out, these families are struggling in the same ways we are and they need our support too.

Saturday, July 11, 2009

Eye Drop Schedule

As it stands right now, this is Emily's daily eye drop schedule:

  • Timolol - Twice a day in both eyes (for Glaucoma)
  • FML - Twice a day in Right eye only - (Steroid to prevent transplant rejection)
  • Iquix - Once a day in Right eye, Four times a day in Left eye (Antibiotic)
  • Durezol - Six times a day in Left eye only (Steroid to prevent transplant rejection)
  • Xalantan - Once a day (at night) in both eyes (for Glaucoma)
  • Cyclopentolate Hydrochloride - Once a day in Right eye only (to dilate pupil)
Her medications and the frequency that she receives them are changed often. It's not only confusing but expensive as well.

Sadly each of these medications only come in a small bottle and have to be refilled every 3 to 4 tune of $50 each, that adds up pretty quickly.

5 Weeks Post-Op

We are now 5 weeks out from Emily's last cornea surgery and so far so good. We had our regular appointment with Dr. Zaidman yesterday. We sat in the waiting room for about 2 1/2 hours before we were seen, which isn't a surprise, but we haven't waited that long in quite a while. I know it's worth the wait to see him and have him make sure everything looks ok, but with Emmy walking now it's so hard to keep her occupied for that long. Next time I'm going to pack a bag full of really noisy toys and maybe that will get us out of the waiting room faster! (yeah right). I have to remind myself that Cornea Transplants and Glaucoma are not common in babies or children. I am usually the only one there with a baby or young child, everyone else is probably at least over 60. We are the rare case, the exception to the rule.

We were seen by one of the resident doctors first, she didn't do much other than look in her eyes with a light and go over her medications...then we were shuffled into the back of the office with the other 6 or 7 people already waiting there. Because of her stroller, I had to stand in the hallway and chase her around...ugh.

Finally it was our turn and Dr. Zaidman came in and examined her. He could see that her left cornea was very clear and looked great. Her lens implant also looked very good. We talked about her appointment with Dr. Kane just 2 days before and he agreed that if he felt that implanting a second valve would be the best option for her right now that it was his call and he was ok with it. He did mention that he would email Dr. Kane and ask him if using either Pilocarpine, Phosphone Iodide or Azopt in addition to the other two Glaucoma drops she is already on would be an option. Apparently some doctors don't like to use Azopt when a patient has had a cornea transplant, but he felt it was worth mentioning to him. For right now none of her medications have changed and her eye drop schedule will stay the same. I guess that's good since it's so hard to keep track of everything as it is.

We also talked about timing of the surgery since he wants to bring her in possibly in August to remove the stitches. That was all left up in the air for right now and will depend on when Dr. Kane wants to do the Glaucoma surgery. We scheduled the next appointment for the Monday after we come back from vacation, so I will get a 2 week reprieve from her doctors visits. Unfortunately the rest of my summer will be spent in doctors offices and hospitals for the second year in a row...

Wednesday, July 8, 2009

No End In Sight

Today I took Emily back into Manhattan to see Dr. Kane for the first time since her cornea transplant. He was very happy with the way her cornea looked, he said it was very clear and he could see her retina and optic nerve well. Her eye pressure was 26 in both eyes, which is just ok... not great...but not completely terrible either. He's not changing any of her medication, but we talked about following through with the plan to insert another valve in the left eye.

The one valve in the left eye is not enough to control the fluid build up, so she will need to have a second one implanted to help maintain a lower pressure. This was supposed to happen months ago but that plan had to be postponed because of the perforation she had in her cornea. Dr. Kane said that he could see her optic nerve and it would benefit from having lower eye pressures. He didn't say that there was damage, but the fact that he said he could see it and it would benefit from the lower pressure leads me to believe he saw something he didn't like. That really scares me. Once damage is done, it is not reversible. If she loses vision in that eye because of it, she can't get it back.

He was encouraged by where the lens implant was placed, it allows her good vision at a close distance. It also opens up alot of possibilities for treatment for her because now there is plenty of room to place the new valve behind the lens, keeping it away from the cornea graft. The further away the better the chance it will not compromise it. Dr. Kane also mentioned that he is considering taking out the old valve and replacing it with one that will work more effectively. He suggested doing the surgery fairly soon, but how soon was not decided. We are going away next Friday for a week at the shore, so it will wait at least until we get back. But that feels way too familiar. This exact scenario happened last July when we were scheduling her first Glaucoma surgery. We went down the shore for a week and came home to a surprise surgery 2 days later. I really don't want to stress about that the entire time we are away. Can't I do anything for just a few days that doesn't require me to think about any of this??? I deserve a vacation from this too you know.

Dr. Kane sent an email to Dr. Zaidman while I was in his office. He wants to get his opinion on how soon he would feel comfortable allowing her to have another surgery. It's bad enough that she will be going back into the operating room in August to have the stitches removed from the cornea transplant, but now she'll have to have the Glaucoma surgery too. And it's a two step process so about a month later she'll have to go in AGAIN so Dr. Kane can open the drainage tube on the new valve. Lets count them....That's 1...2...3 surgeries that will need to take place within the next 2 months. That means that by the time she is 2 years old she will have had at LEAST 15 surgeries. And that's not including any further exams under anesthesia she might need. That total will be coming close to 2o by October.

With 3 more impending surgeries, I just can't help but feel discouraged today. I know that her cornea looks good and so far is doing very well. And I know the valve needs to be replaced to better control her Glaucoma. And I already knew that these surgeries would be coming up. But when you look at the big picture and realize what she has been through already and what she still has to go through, it is just overwhelming. She doesn't deserve this.

A good friend asked me today if there was ever going to be an end to her surgeries. Sadly we will never be able to answer that question.

Sunday, July 5, 2009

New Drug To Prevent Corneal Rejection

I found this article online and thought it was really interesting. I'm not sure if it would be something Emily would be able to benefit from at this point, but worth mentioning. I wish she could be part of the trial study.

LUMITECT (LX201) The only drug to prevent corneal transplant rejection is ready for phase 3 trial

Cornea is generally a tissue that is not vascularized, does not contain blood vessels and thus is less prone to acute rejection, the rate of rejection reactions in high risk corneal transplant patients is in the range of 50 percent over one year.

Lux Biosciences today announced the completion of enrollment in the company’s phase 3 LUCIDA (LUx Corneal Transplant Implant Development and Advancement of Therapy) clinical trial program for LUMITECT™ (LX201).

LUMITECT is a silicone matrix ocular implant that steadily releases therapeutic doses of cyclosporine A locally to the eye for one year. LUMITECT is implanted under the eyelid into the subconjunctival space (the area beneath the transparent tissue covering the white of the eye) in a minimally invasive procedure.

Lux Biosciences is evaluating the implant clinically for the prevention of rejection in corneal transplantation. LUMITECT has received Orphan Drug status in both the United States and Europe, and Fast Track status in the United States.

Ulrich Grau, Ph.D., President and Chief Executive Officer of Lux Biosciences says that they are very gratified to have reached this important developmental milestone for LUMITECT, a therapeutic product candidate that has the potential to address a major medical need for which there are no currently approved treatments.

According to the official report from Lux Biosciences, data from the first of two pivotal LUCIDA studies is expected later in 2009, while data from the second study would become available in the first half of 2010.

At present approximately 32,000 corneas are transplanted each year in the United States and an additional 22,000 in Europe.

Source: Business Wire

* * * Here is the original article: