Toddler/Baby Glasses

Grant's glasses came in! 

The first time he let us (ha!) put them on, he kept looking around the office in awe..the ceiling, racks of glasses, people passing by...his eyes moved slowly from one object to another. 

"Watch him." the optometrist whispered. "He's seeing everything clearly for the first time. He can see now."

****

 Today is just Day 2 of wearing them, but he seems to LOVE them! I'm really kind of shocked..I thought he would be ripping them off and that I was going to have to break out major bribery tools to get him to keep them on...but he rarely messes with them. The only time I (consistently) see him touch them as though they bother him is during meals...I'm thinking that the new depth perception might bother him when he's reaching for food on his high chair tray.

Speaking of depth-perception, he is having a lot of balance issues standing and walking with his glasses on. He's very clumsy and has been tripping quite a bit, but once he figures it all out, he's going to be perfect.

******

Watching the evening news (which is the only show he'll watch other then Jeopardy :)

He might be unsteady on his feet, but he can still balance on his head! 

I know we are just a couple of days in, but I'm so excited for Grant to be able to see and explore the world in a new way! 

all for now! 

glasses!

Grant had another appointment with his pediatric ophthalmologist last week (a routine check up which he has every 3-4 months). Everything is fine (other then the astigmatism, of course). After talking with the cornea specialist, our two eye doctors have decided that right now, the best route is for Grant to wear glasses to see if it helps correct the astigmatism (caused-of course-by the limbal dermoids on his eyes). Surgery to remove them is a tricky procedure, and really should only be done if all other avenues are exhausted. The Cornea Specialist told me that if the dermoids become something that Grant is self conscious about (say-in another 10 years), that large, thick contacts (that also cover the dermoids) are absolutely a possibility and a route we'll take then. I'm very happy and at peace with the outcome.

After we left the Dr.'s office, we headed downstairs to pick Grant out some glasses! We had exactly 4 choices: a blue rubber pair, a pink rubber pair, and two ugly metal ones. The lady helping me told me nobody has quite broke into the toddler-glasses fashion scene yet-haha! Having a 1 year old boy-the obvious choice was of course the blue rubber ones (they DID have black ones too, but they had to be special ordered which would take several more weeks, so I decided to just wait until next year :) 

These are just the display glasses of course (his will still take several more weeks to come in), but here they are! 

I have a feeling a lot of bribery and candy consumption will occur to keep these things on! haha!

We are counting down the last few days of school!!!

one of those eye posts.

So last week Grant had an appointment with a Cornea Specialist to get an opinion on what the next step for Grant is. 

Very quick recap:

Grant has an astigmatism due to the limbal dermoids on both eyes.

Local Pediatric Ophthalmologist believes it is an irregular astigmatism.

Regular Astigmatism=glasses. Irregular Astigmatism=surgery.

Surgery will be very tricky because of the nature of the limbal dermoids.

******

So...the Cornea Specialist took a quick look at his eyes and thinks it just a regular astigmatism, and that we should just pop a pair of glasses on Grant and call it a day. Right now the two doctors are at odds. I'm inclined to agree with his regular Pediatric Ophthalmologist because he sees Grant every 3 months, and has done many THOROUGH exams, both with dilation and non-dilation, using many instruments and tools-not to mention his profession includes working with babies and non-cooperative toddlers. The Cornea Specialist did not use tools, there was no dilation, and frankly, he is use to working with adults who can follow simple directions like "look up." Even so, I think the Cornea Specialist is incredibly smart and wants to help Grant.  He also doesn't think "we" should kick our feet any longer because Grant is getting older and it is easier to treat them when they are younger. So the two doctors are comparing notes and opinions and we have follow-up appointments with both in the next month.

*****

I left the appointment VERY frustrated. 

I keep going back to the day he was born and peering into his eyes, wondering what in the world those "white spots" were. I kept telling myself they were probably just swollen tear ducts or something. I mentioned them casually to the RN-she smiled and said it was "eye gunk." I knew she was wrong.

I go back to the countless well-child appointments in his early infancy with his former doctor. How she couldn't tell me what they were, but because it wasn't an "emergency" she wouldn't put in a rush appointment to the only local pediatric ophthalmologist (who stays booked MONTHS in advance). 

I go back to the day he was 6 weeks old and I found the limbal lipoma in the corner of one of his eyes. I remember calling for another appointment with hot tears in my eyes. I remember angrily telling the office that I wanted to see a pediatric ophthalmologist in Chapel Hill immediately. 

I remember going in for a consultation with Plastics in Chapel Hill (for the skin tags on Grant's face) with a trusted Plastic Surgeon, and he, just like that, gave me the official name of those "spots" on his eyes (Epibulbar Dermoids-aka limbal dermoids), as well as the name of the condition Grant has: Goldenhar Syndrome. 

I remember frantically trying to remember all of the fancy names he used so I could go home and google everything about it under the sun. 

I remember going back to Chapel Hill just two days later to meet with a pediatric ophthalmologist who told me Grant's eyes were "perfect" and scared me into NEVER allowing ANYONE to perform surgery because they would ruin his eyes forever.

I remember pondering and praying about his radical diagnoses for a few months before deciding I would absolutely seek a second opinion-with our local ophthalmologist. We love him and have been seeing him ever since. However, we are at this point where something needs to be done, and we don't know what that something is.

************

This has been such a long, frustrating road. I just want Grant to be able to see, and to be able to see clearly. Right now, we are just praying and waiting for the "verdict" from his doctors.

Limbal Dermoids & Astigmatism-11 months

**I receive several emails a week/month from people around the world concerning [mainly] Skin Tags & Limbal Dermoids. If you found my blog through Google or Google Images & you have any questions or just want to talk, you can email me at: mtrochelman@gmail.com. I can usually work through the language barrier :)**

**You can find the rest of my Limbal Dermoid posts by clicking here**

Today we had Grant's ophthalmology appointment for another full examination. We have been (and will continue to) have these appointments every 3 months to monitor his eyes. He was born with Limbal Dermoids (also called Epibulbar dermoids) on each of his eyes, as well as a lipodermoid in the corner of one of his eyes. They are there due to him having the craniofacial disorder, Goldenhar Syndrome. The dermoids on his eyes have caused the shape of his eyeball to form a "football" shape-making him have an astigmatism. Grant specifically has an irregular astigmatism. Since birth, the astigmatism has progressively gotten worse.

SO- the latest on his eyes...His astigmatism has gotten significantly worse since his last appointment (at 8 months old). At this point, there is nothing more his ophthalmologist can do (other then monitor), and he has referred us to a Cornea Specialist, who will more then likely recommend surgery to either (a) remove the dermoids or (b) "shave" the dermoids down. Glasses are not an option right now, because they cannot stop the process of his eyes getting worse. Although Grant can see, his vision is very blurry.  

Right now-we are simply in a waiting game. His appointment with the specialist is a few months away, but even so, his doctor thinks acting now would significantly help Grant see, rather then waiting until he is older.

***********

So this is where we are now. Days like today are so emotionally draining. We have to do this again next week with Harp's appointment with radiology & his surgeon. We cling to hope and God's promises..because some days, that's all we have.

**********
UPDATE: The Cornea Specialist believes Grant has a regular astigmatism, and recommended glasses. Grant has been wearing glasses now since June 2013, and we still monitor his eyes very closely. In December 2013, we were suppose to have a full examination with his ophthalmologist, however, Grant was being less then cooperative, so it has been rescheduled for March 2014. We'll know more then! 

Ophthalmology Appointment: dermoids and astigmatism

Grant had an ophthalmology appointment yesterday to check the limbal dermoids, lipodermoid, and to follow up on his astigmatism.

So the dermoids and lipodermoid has stayed the same (which was expected), but his astigmatism went from being "slight" to "moderate." 

He will definitely have to wear glasses to correct it, which he will probably get around his first birthday.

I like to joke that I have my Google, M.D. license, but I'm still learning all of the medical jargon between Harp and Grant. So heres the deal: 

The limbal dermoids have caused Grant to have an astigmatism (I think at his last appointment the ophthalmologist said it was an irregular astigmatism, but I could be wrong). The astigmatism could and probably will only get worse. What to do? Well the ophthalmologist had mentioned shaving the dermoids down a while back, but now he suggesting that we see a cornea specialist to get his/her opinion on having the dermoids surgically removed. Its a super "dangerous" surgery-meaning it is really easy to damage the eye, but Grant's eye doctor thinks that having them removed will improve the astigmatism and prevent it from getting worse. And as I mentioned before, he will also have to wear glasses.

Right now we just wait. He has been seeing the ophthalmologist every 3 months, and has another appointment set up for the end of January when he will be 11 months old. 

**********

Grant also had an ultrasound of his kidneys 2 weeks ago. There is still stretching in his kidneys (hydronephrosis), but they have grown correctly and are the size they need to be. Praise God! We won't have to see the urologist again until next year!

quick update + pictures

**Harp's eyes are fine. He has an MRI scheduled for the 27th to see if there are any AVMs located in his head. Grant's ophthalmology appt is next week (I'm taking him here locally-he has a LOT of puffy/swelling under his eye). Grant's craniofacial appt. is set for September & his genetics/metabolism appt is in November. Both of those are in Chapel Hill. Oh and I have yet to set up Harp's follow up for the AVM in his leg because I wanted to see the results of the local MRI first. And yes, if you are wondering, I have a big folder & calender that helps me keep up with all of these appointments!**

Just some grainy cell pictures from the past week!

carson & grant

the boys are currently obsessed with almond milk! 

Harp was just a little bored waiting for his eye appointment. At least he was quiet!

sweet baby.

he can roll from his front to his back!

and look who is sitting up (assisted)! 

my brood.

"Harpy" & his baby. Yes he calls him his baby.

big boy!

Harper's Appointment

So Harp (finally) had his 4 year check-up today (3 months late)...it went okay. 

There was a scary moment when we thought he might be hard of hearing, but after a few rounds of screening, he passed. there are times when he literally will not bat an eye when we tell him something, much less respond/listen to what we said, so the hearing problem possibility has crossed my mind a few times...the doctor did confirm that in fact, he is simply disobedient :)

now one test he did NOT pass is his eye test. at first i thought he was just being difficult, but when he was able to read some of the lines with his other eye, it dawned on me that he was probably telling the truth. he really bombed the test, specifically with his left eye. which, go figure, happens to be Kane's really "bad" eye. So we have an appointment with the eye doctor on Monday afternoon to redo the test & determine if he will need glasses. 

As much as I would love to pray that his eye sight is perfect, it WOULD bring me comfort if he needs glasses in that it would explain his recent headaches. I could write a novel on this, but to keep it short, Harp has these random vascular malformations in his toe & thigh. He has had scans done of his stomach down to his toe, but has NEVER had any kind of scan done of his head. And that is something that has ALWAYS bothered me. There could be another vascular malformation growing inside of his head, & we would have no idea. do you see why him having a headache would bother me? after mentioning this to his new ped, he agreed that we should get a scan done of his head. The office is making a referral, so hopefully it will show results that can finally bring my heart some ease. 

it's also been almost a year since he had the incisional biopsy, which means he is due for another appt in Chapel Hill to actually determine treatment for the vascular malformation that is in his leg. I have been absolutely dreading this appointment.

Anyways, he is otherwise doing great and growing! 

Check back Monday night to see what the deal is with his eyes.

a second opinion-limbal dermoids

it might be simply because Grant is getting older, but the limbal dermoids are much more noticeable now. i'm hoping praying it is because he so alert and curious (looking around) that they are noticeable, not because they have grown. 

to be honest, i wasn't crazy about the ophthalmologist we saw in chapel hill (and i have NEVER said that about any other doctor in chapel hill), so i decided today that i'm going to get a second opinion.  and while i was riding that train, i broke down (literally, in tears, frustration, and anger) and "fired" the boys' pediatrician and found a new one. 

i took several pictures today and noticed underneath his left eye (right-if looking at him) is swollen, so i'm going to be battling my way through receptionists tomorrow morning trying to get him in to the doctor...locally. just my opinion, but the doctors (that we have encountered here in wilmington) are subpar. 

prayers. please.

newborn limbal dermoids/goldenhar syndrome

As I've mentioned before, Grant was born with two limbal dermoids-one on each eye, on the bottom part of each iris. Unless he is looking upwards, they really aren't noticeable as they are hidden by his bottom eyelid. What I haven't mentioned on here is that I found another "something" in the corner of one of his eyes when he was around 5 weeks old (do you see my concern as to why I took the Chapel Hill appointment instead of the local appointment!?) The "something" in the corner of his eye is a limbal lipoma.   

I don't have great pictures of either as they are concealed by his eyelids, but here is an idea of what is going on:

The dermoids are actually much larger and more "raised" then the picture conveys. The lipoma is hard to see because it simply looks like the corner of his eye, but there is a flap of tissue there that is definitely not suppose to be there.

We had Grant's ophthalmology appointment today, and after a full examination, it was determined that Grant's eyes are p.e.r.f.e.c.t! With Goldenhar Syndrome, it is common to have poor eyesight, blindness, or a whole slew of eye problems. His eye sight is great, they can focus perfectly, the muscles are strong, and the anatomy is as it is suppose to be! 

As for the dermoids and lipoma, the Dr. has suggested that we simply leave them as they are. Surgery is very dangerous and can ruin his eyes...so to fix something for the sake of vanity could make him have extremely poor vision, a drooped eyelid or eye, and/or simply ruin his eyes. Now, if they (the dermoids) become larger or grow hair (yes, they can actually grow hair!) then parts of it will have to be removed.

Unless something comes up, we are eye doctor free until his first birthday! 

I know this is just the beginning of a very long process dealing with Goldenhar, but tonight we are praising God and His sovereignty. 

finally some answers- Goldenhar Syndrome

i'm running on about 5 hours of sleep so i'm going to make this short.

we had grant's plastic surgery appointment today in chapel hill. 

after Dr. Gage took a look at his skin tags, he asked if there was anything else going on with him...i told him he was otherwise healthy, but that he had these lesions on his eyes. as soon as Dr. Gage saw them he referred to them as "limbal dermoids." He then checked Grant's ears and mentioned that one of his ear canals was incredibly narrow (which i have noticed already). After this, he checked out his mouth and saw his uvula was split (bifid uvula). 

So what does all this mean?

Grant has a condition known as Goldenhar Syndrome. 

he doesn't appear to have the facial disfigurement that is associated with it, but we really won't know more until we meet with a team of doctors in the craniolfacial department. they will check his entire ear/nose/throat anatomy and determine treatment. 

his skin tag removal surgery (it's a bit more in-depth then i anticipated) will be May 21. the craniolfacial appointment will probably be in a few months where he will be fully evaluated.

its been an exhausting day, so that's all i have for now.

please pray continuously for this sweet baby.

Quick Appointment(s) Update!

just wanted to give a quick update on the appointments going on this week!

Grant has 3 appointments this week...today we had our well child 2 month check-up (we are already a bit behind..go figure). it went great, with the exception of the slew of immunizations. 

grant now weighs 12 lbs, 8 oz. and is 23 1/2 in. long. he's growing! 

****************

on wednesday we have to go to chapel hill for the initial consultation with plastics. we are using the same plastic surgeon we used with harper which is AWESOME because we really liked Dr. Gage. 

more then likely, they'll just take a look at the skin tags on his face and determine when the best time would be to remove them (either sooner or later). 

*************************

i have been SO worried about the spots on grant's eyes and his ped and i decided that instead of waiting for the July appointment with the local pediatric ophthalmologist, we would try to see if they could see us in at chapel hill sooner. surprisingly, they were able to get us in this friday! i'm super nervous about it, but know that regardless of what they say, it will all happen according to God's will. 

here's a grainy picture of what is on the bottom of BOTH of his eyes. 

prayers for both appointments are greatly welcomed, specifically for the ophthalmology appointment. we will continue to let everyone know whats going on when we know more! 

Grant is 1 month old!

this past friday marked Grant being 1 month old! 

he had an appointment today and is doing great!

he weighs 9 lbs 12 oz and is 22 in long

(he was born 7 lbs 10 oz and 20 in long).

he's growing!

he has his Urology testing April 9, Ophthalmologist appointment in July (seriously..in all of Wilmington there is only ONE pediatric ophthalmologist), and we are waiting for the referral for his appointment with plastics. as far as his plastic surgery goes (for the removal of the skin tags) we are going to have to go back to chapel hill. because we are already established with the plastics department in CH (because of harper's hemangiomas/vascular malformations) they want to send us back AND because they are on his face they want to make sure the "best of the best" removes them to avoid much scarring. 

and now...the pictures:

and next up: my journey with the 30 Day Shred!

grant: health update

quick preface:

i hate being so "public" with grant's issues, but it is SO much easier to explain it once on here instead of having to explain it thousands of times in person.

where to begin?

grant was born with skin tags on his face and ears. he has five altogether: two in one ear, one on each cheek and one in his other ear. skin tags are not dangerous and are common in newborns. at this point, they are simply a vanity issue, but will removed sometime in the next several months. however, (because there is always a "however" with us) the skin tags seemed suspicious to the doctors because they are symmetrical on his face...they are in this perfect line from his ears down to his chin. now this is where i might lose some of you :)  during pregnancy, the ear/nose/throat anatomy is formed around the same week that the kidneys/renal system are being formed. sometimes with infants if there is something wrong with the kidney/urinary tract, it will "show" itself in form of skin tags. 

we had an ultrasound at the hospital when he was born and they initially told us that everything looked fine. however, at his newborn checkup we were told that there was some "stretching" in his kidneys and that there could be some problems...we went to the urologist this past week and they said he could (or could not) have an extra set of tubes in his urethra. we go next month for a test that will determine if when he urinates, if there is any backflow...regardless if there is a duplication of tubes, if there is no backflow, we are in the clear. if there is backflow of urine, then the tubes will have to be removed.

okay...and lastly...

there are very FEW people who know about this...mainly because we don't know what it is and cannot give it a name. when grant was born i noticed he had white "gunk" on the bottom of both eyes. i asked the nurse and she said it was just eye gunk/"sleep." i knew that wasn't what it was, but figured it would go away....it didn't. we asked his doc at his appointment the other day and he basically had no idea what it was either. i've googled everything under the sun and cannot find any information on it. we have an appointment with an opthamologist soon....

the "white spot" is on both of his eyes...on the bottom of each iris. you cannot see it when looking at him unless he looks up in the sky or if you actually pull his bottom eyelid down. i'm not going to post pics of it but i did my best to draw a picture of what i'm talking about just to give you an idea:

so thats what going on...

i'm not going to lie...i was completely taken off guard by all of this. i had an event-free pregnancy and his ultrasounds always looked good. 

after all of the appointments/trips to and from chapel hill/pre-ops/post-ops/surgeries with harper...my heart sank when i realized that this was all going on with grant. aside from the stress of it all, i dread having to watch grant get poked and prodded at like harp had to. but it is what it is and we'll have to deal with one step at a time. 

aside from all that, grant is doing great! he is SUCH a good, easy baby. he eats well, he sleeps great at night, and has such an easy-going personality. he is everyone's favorite person in the house right now! :)

we'll continue to keep everyone posted once we know more.