I haven’t written in a few months… it has been a tough battle… and now we feel like we are coming out of our “funk.”
Christopher had a trabeculectomy about 2 months ago. It came as a total surprise too… We were expecting to have valve implants… but when the Surgeon entered the eye… he said his eye tissue was just too thick and that he didnt’ believe the valve implants would work efficiently at all… so he elected to move forward with a trab instead.
We were stunned, shocked, distraught, dismayed, all that and more. Our son is only 2 years old and according to the research we’ve done… he may never be able to swim, play sports, etc. This is just horrible news for us.
The post op was excruciating – in fact, we are still in “post op” as we still have to administer drops about 4 times per day. This is a breeze compared to what we went through for 3 weeks following the trab. Drops every hour – on the hour – even through the night. We had to rip the shield he had on … off of him for every drop… then tape it back on. Our son fought us the entire way… he HATES drops, shields, patches, etc. and he is very strong, stubborn and he is a fighter. The combination of all of that equaled – a very difficult, tiring, exhausting, emotional 3 weeks!
But, since then for the last month and a half…our spirits have risen to a higher plateau than we ever thought would be possible again! My real estate broker – Susie – made it a point to find out what we were going through. Then she took steps to get us some help – emotionally, physically, spiritually, and financially. We have never seen an outpouring of help and encouragement in our lives! Everyone at the company I work for (as well as many other companies) came to our aid and did countless things for us. I don’t have the time to explain everything that was done, but here is a synopsis:
Dinner’s were made for us – every night – for weeks on end! Amazing! Medical supplies donated to us. Lots of gift cards and money was raised and given to us and it couldn’t have come at a better time. Encouraging words. Cards. Support. Words just can’t make other’s understand what this did for my family! Thanks for any and all who helped us out!
We aren’t out of the woods just yet… but there is HOPE.
I have tried to stop asking the question WHY so much… I am still tormented over it at times… but I’ve tried to allow myself to climb out of the mental mess that I’ve been in for a couple of years. It hasn’t been easy, but I’m getting better!
Christopher is doing just great at this point. He is up to 27 hospital visits/surgeries. The trab seems to be working – at least for now – and with this horrible affliction that is all we can hope for. Now… we just hope for longevity! He is the smartest kid in the world (I think anyway… lol) and he brings complete joy and happiness in our life!
Now… we have a whole new set of worries… We found out over the weekend that my wife is pregnant again! We are overjoyed and extremely happy and excited! At the same time…we’re worried b/c congenital glaucoma is funny. I thing the chances of a sibling having the same condition (at least boy/boy siblings) is something like 1 in 4! That is horrible odds considering that it is extremely rare to have a child with one in the first place! Amazing! Now what? At least we know what signs to look for and what will/could happen should our next child have it.
Anyway, life is pretty good for now… for today… and we’ll relish in it. Hope is all we have for the future of Christopher, our next child, life, etc. Maybe now when I ask the tough “Why?” Questions… I can at least counter them with “Hope…” there is hope…
I have also decided that I will be getting a tatoo – something to do with Christopher and his eyes… haven’t quite decided yet… but I will be getting it soon. I actually decided that I would be doing this a year or so ago… and now I’ve decided to get it done soon (I want it before our next child gets here.) I just feel like I’d like to have something on me that reminds me how precious Christopher is, and to not take anything for granted – eyesight included!
My wife and I have also decided to look into joining the Lion’s Club. They were a huge help over the past few months and actually helped us out in so many ways. We have always been giving people and want to give back to an organization that we absolutely have a strong affinity towards!
Ok… that’s it for now… some good, upbeat news for a change! Wow! Feels good on this end too… lol.
Til next time…
chris
Christopher's Eyes 
September 20, 2008 at 8:28 pm
Hello, my name is Danielle and I am a mother of 2, Alex 19 months and Mia almost 4 months. I was reading your blog and I know what you are going through. My daughter Mia was diagnosed at her 2 week check up with a unilateral congenital cataract in her right. She had surgery at 1 month old at which point she had an IOL (intraocular lens) placed in her eye. Because she received an IOL implant she needs to wear glasses to make up the difference in strength from the lens. We also need to patch her good eye for most of her waking hours to force her bad eye to begin seeing. Since her cataract surgery her IOP has been very high, she was taking several different glaucoma medications to help decrease her pressure, however her IOP remained high (mid 30’s). She had an exam under anesthesia when she was 2 months old, and her pressure had dropped into the high teens so we thought she was in the clear until she went for an eye exam 2 weeks later and her pressure was back up in the 30’s. She had glaucoma surgery this past Tuesday, at which point and iridotomy was performed and she also had a valve placed in her eye. Her PO told me that some children can have up to 4 valves placed in their eye to help control the pressure. He also told me that she will be battling with glaucoma for the rest of her life. Mia’s cataract was not hereditary and was caused from a blood vessel that did not detach during the first trimester when her eyes were developing. I know that we have a long road ahead with many surgeries, eye exams and different obstacles along the way such as strabismus, and amblyopia. It’s the hardest thing in the world watching your child go through so much at such a young age. I feel your pain.
Danielle
September 23, 2008 at 8:22 am
Danielle,
Thanks for posting! I hope Mia’s is healing well from her valve surgery. I think the hardest thing about this disease is that you really never know what is going to happen. The best advice I can give you is to take things one day at a time and try not to worry about what could happen. I know that is hard to do. Learn as much as you can about her condition which it looks like you already have. Christopher was 3 months old when we found out that he had Glaucoma he has had about 29 EUA’s since then and 7 surgrey’s total he is now 2 years old. Plus the countless trips the the doctor’s office. He has gone thru about 5 pairs of glasses, which is not cheap. We patch one of his eyeS now about 7 hours a day which is really hard to do. But as crazy as this sounds he is conditioned to it, it is a normal part of his life and he is stronger then we are about it. He is not delayed in any way, in fact he is smarter then the average toddler. I hope the best for you and your family, stay strong.
Laura
October 1, 2008 at 9:52 am
Hello,
My son Bennett just had a 3rd goniotomy on his right eye yesterday at Mass Eye & Ear in Boston. I came across your blog today by chance. Ben was diagnosed at 3 months as well and I don’t even remember the number of trips to the office anymore, including a post-op this morning.
Thanks for posting – I’m going to take some time and go through all the posts.
It is strange how all of this becomes the new normal in your life.
I plan on checking back often and wish nothing but the best for Chris and you.
-RICH
October 2, 2008 at 12:56 pm
Hello,
Laura, Thank you for the encouragement, I feel like my head has been spinning since she was diagnosed and it has been a roller coast ride ever since. I think the more information we receive the easier things have gotten, it’s the unknown that scares me.
Rich, I am also from MA, my daughter has had all of her surgeries at Boston Children’s. Her ophthalmologist is from Children’s and her glaucoma specialist is from Mass Eye and Ear, Dr. Douglas Rhee.
There is a great support group for parents dealing with cataracts and glaucoma, yahoo APHAKIC and yahoo PGCFA (pediatric glaucoma and cataract family association) there is also the PGCFA website that has a lot of information on these eye conditions. There are parents that post on these forums that have older children and that have been dealing with eye problems for years, you are able to find out what problems you might run into and they are able to answer any questions you may have. My daughter was born with a unilateral cataract which puts her at risk for several different eye disorders, since her first surgery when she was 1 month old she has developed glaucoma and nystagmus (shaky eyes). These forums have helped me identify and deal with the onset of nystagmus; which really freaked me out when she developed this eye disorder. My daughter just turned 4 months old and she is finally able to focus on objects and just recently started looking into my eyes. It is a great feeling know that she is now able to identify me by face and not by my voice. It is crazy how resilient children are, she has been through 2 surgeries and 1 EUA and she is one of the happiest babies.
I hope all is well with both of your children.
Danielle,
Mother to Alex 19 months and Mia 4 months.
June 3, 2009 at 12:35 pm
Hi, my son recently had a trab. and I was wondering how your son’s eye was after the patch was taken off. did he squint a lot? we only had to leave the patch on for a litte over 2 weeks and we are not sure we have to give him eye drops in that eye any more. my son is 7 months old and we found out about glaucoma at 4 months. it’s been tough finding any information or any other parents to talk to about this. the surgeon is good, he’s just not very forthcoming in his information.
It’s comforting to hear that our little guy is not alone it sounds like although our guys will have a lifetime of eye issues, it is their normal and they will be okay.
June 16, 2009 at 5:03 pm
I would like to encourage hope in each parent that has a child struggling through the surgeries, drops, poking and bright lights. I was diagnosed with congenital glaucoma at the age of 4 with pressures in the 40s. Since that time I have undergone over 12 operations in both eyes. I completed high school, college and grad school. I competed in both HS and intercollegiate athletics. I am married with four children. I have worked as an engineer for 20-years. My most recent surgery was about 10-years ago. At the age of 41, I have been a very blessed man. My eyes have been a life long struggle, but if it is a struggle that my parents and I overcame (at least for 41 years) your feisty kids with determined parents can do it too. If I can answer any questions please feel free to email.
June 16, 2009 at 5:06 pm
By the way, the majority of my surgery was performed in Boston as well, both at the Children’s Hospital and Mass Eye and Ear. I owe an untold debt to Dr. David Walton.
June 2, 2010 at 12:19 pm
I’m so new to this and don’t know anything about blogging this is my maiden voyage. I have a friend who is 51 with severe glaucoma and is looking into getting the Trab surgery. We have just stated looking for info on this. He is understandably concerned as he’s already lost more than 50% sight in one eye and his good eye is the one that is failing. Your comments have been informative and helpful and we thank you for taking the time to share your insight. Any additional info you can provide would be greatly appreciated.
I
July 10, 2009 at 2:06 am
Luke thank you for the encouragement, I have parents on one of my forums that travel from California and upstate NY to see Dr. David Walton. I have heard how wonderful he is. Do you have bilateral or unilateral glaucoma? There are 2 parents on one of the blogs i read that have children with congenital glaucoma. They have been researching and trying to find information on how glaucoma will impact their children’s vision when they get older. The blog is http://littlefoureyes.com/, I know your experience with this disorder and your life achievements and success will put them at ease.
I was wondering if any of you have any information, or experience with corneal transplant surgery or Keratoprosthesis? Our daughter had a Baerveldt glaucoma valve placed in her eye when she was 4 moths old. During an EUA 6 months ago, we were informed that her valve/shunt shifted out of place and was very close to her cornea. Her glaucoma specialist told us that since the valve was not obstructing her vision, we would wait it out, however there was a possibility that this could cause damage to her cornea, instituting the need for corneal replacement surgery. Our daughter had another EUA 2 months ago and her valve is now pressing against her cornea which has causing scaring. I have been anticipating the possibility of this occurring so I have been researching this procedure. We have a few different options that we will be discussing with her glaucoma specialist, and one will be a corneal transplant. I was reading up on Keratoprosthesis and the low rejection rate. If our daughter receives a donor cornea there is a high probability of rejection. I am also concerned about our daughter taking anti-rejection medication, she is so young, this really makes me nervous. We are already anticipating muscle surgery when she turns 2 to help realign her eyes, she currently has exotropia in her aphakic eye and she also has a null point from her nystagmus. Another major surgery makes me really nervous, and the chances of her needed additional surgeries if she rejects the cornea scares me. Have any of you had any experience with this procedure?
Thank you,
Danielle
June 2, 2010 at 12:21 pm
I’m so new to this and don’t know anything about blogging this is my maiden voyage. I have a friend who is 51 with severe glaucoma and is looking into getting the Trab surgery. We have just stated looking for info on this. He is understandably concerned as he’s already lost more than 50% sight in one eye and his good eye is the one that is failing. Your comments have been informative and helpful and we thank you for taking the time to share your insight. Any additional info you can provide would be greatly appreciated.
June 3, 2010 at 3:27 pm
Debra,
The Trab was hard but mainly because our son was only 2 years old when he had it done, we had a hard time with the post op eyedrops, it was like a torture chamber at our house for several weeks but slowly the eye drop frequency slowed down. Because we had to worry about him injuring his eye he did wear a shield over it for a while and we watched him like a hawk while he played around the house. I can say that following the surgery he could not bear sunlight or even bright indoor lighting, we had to keep the house very dark. My best advice would be to make sure that your friend takes all of the drops as the doctors orders following the sugery, infection is a big worry, in fact infection is a risk forever following a trab. Best of luck to your friend. Just so you know our son has not required surgery in that eye again for the last 2 years, so that is great news. Laura
June 3, 2010 at 3:46 pm
Thank you so very much for your reply. Any information we can receive on this is greatly appreciated. I’ll probably have the same problem with my 51 y.o. child – he’s a big babby as well. Just kidding (for the most part). Thanks again.