A Difficult Goodbye

Today, Makayla's Vision and Physical therapist came for the last time.  There will be new therapists when we get to the new house in Southern California, but I find it hard to believe that we will find a pair as amazing as these two warm, kind, loving, generous and smart women.

I managed to keep the tears at bay during the visit, but they are flooding in now. 

I have gone on an on about these wonderful ladies in the past and their impact on our lives, but now that we have had our last visit, I can't stop thinking about all the progress that they have helped Makayla to make in the last year and a half.  When they started visiting out home, Makayla was just four months old, and she could still hardly hold her head up and she was keeping her arms up in the air to balance herself.  It was only a few weeks after we had been visited by the Blind Babies group, and had just learned that Makayla even could see at all.

Within a few short months, Makayla was holding her head up and not using her arms anymore.  She had started "army crawling" and we were learning all kinds of things about the way that Makayla sees.  With each visit she made huge strides and we were coming to learn that she actually sees quite well.

But, they have been so much more than therapists and teachers.  They have been friends, a support team and an extra set of moms.  They helped Makayla to take her very first steps and we all cried together as we scrambled for the video camera.  They have talked me through some of my hardest weeks and stages as a new twin mom.  They taught me to sing songs other than the ABC's, and their hand motions.

They have given me amazing tools, and taught me wonderful lessons.  They made me feel normal when I was at the end of my rope.  They laughed with me, they have cried with me.  They taught me the questions to ask, and guided me down all the right roads.

I am so grateful for everything, and will miss them so much.  Although it won't be the same to not see them on a regular basis anymore, I hope that we can stay in touch and they and are forever a part of our lives.

Little thank you gifts for our Vision and Physical Therapists

1 Week Post Op

One week post eye muscle surgery

Today is one week since Makayla's eye muscle surgery to improve her nystagmus and correct her stabismus (lazy eye).

I am really impressed with the amount of healing she has done in just one week.  After surgery, the doctor told us that it could take 6 to 8 weeks for the blood in her eyes to clear up and to really see the results of the surgery, but the blood in the whites of her eyes is significantly reduced now, and just yesterday, I started to really see the difference in the movement of her eyes.


At this point Makayla seems to be in no pain.  I would actually say, she seemed to no longer be in pain by day three or four, but we have continued to give her tylenol every four hours to be sure.  however, yesterday afternoon, we gave her, her last dose of tylenol, and she hasn't had any since.  She slept all the way through the night and woke up a happy little girl. 

We have noticed that she is exceptionally tired though.  This girl normally never sleeps, but since the surgery, she could probably stand to return to two daily naps and still get a full night's sleep.

The comments and stares I wrote about last time, continue to bother me, but it just makes me grateful that we did the surgery now, before she's aware of what other people think of her. 

On a much happier note though, while I was shopping with my sister-in-law yesterday, we stopped into a store that I have visited with the kids a handful of times, and one of the ladies that worked there asked of Makayla's eyes were okay, since she noticed the bloody corners of her eyes, and my sister-in-law explained that she recently had surgery on her eyes.  Immediately the lady remember her as the girl who's eyes moved a lot back and forth, and pointed out a noticeable difference in the movement.  My sister-in-law actually had to point out to her that Makayla's eyes still to move, but thanks to the surgery, they will hopefully move a lot less from now on.  That felt pretty good!

Home Sweet Home

Since Dr. Hertle was kind enough to come into his office on a day when he was working out of town, just to see Makayla for her follow up appointment, we were able to get home almost a full week early!

Our flight out of Akron left really early on Saturday morning, and we had a flight delay at our layover in Denver, so it was a really long trip home, but Makayla was wonderful.  Even though she showed no signs of being in pain, I kept her on Tylenol and Codine to keep the pain at bay throughout out flight, and she slept the whole way home.

I have to admit though, it was had for me to handle the stares and reaction we got from strangers about Makayla's eyes.  One woman pulled her child away from us and asked if Makayla had a bad case of pink eye.  But, most people said nothing at all and just stared.  One woman started the whole time she walked towards us, and then turned around and stared even as she passed us.  The whole way to Akron every single person told me how adorable Makayla was and what a sweetheart she is, but it broke my heart to get such the opposite reaction on the way home.  I know that her eyes are a bit startling...but she is still my beautiful, sweet, fun baby girl!

There was one person that was excited to see us though.  When we were waiting to board our second flight, I was kneeling down with Makayla when I heard tennis shoes squeeking on the tile airport floors.  When I looked over to see, it was this adorable little girl running our direction and her mom and sister right behind her.  She was smiling and ran right up to Makayla to say, "hi."  When her mom came up, I quickly explained that Makayla had just had surgery, so that she wouldn't be startled by her eye, and she asked about her surgery.  I explained that Makayla has something that causes here eyes to always jerk back and forth, and she asked if it was nystagmus, and pointed out that her daughter, the one that came running up to meet Makayla, had nystagmus too. 

My flight was boarding so we only had a few minutes to chat, but I explained how we had traveled from California to Ohio, just for this surgery and to see Dr. Hertle, and she was very interested.  She said, "Obviously we were meant to meet today" and she took my phone number.  I hope she calls and we can share some information!

Now that we are home and trying to get back to our normal routine, I realize that Makayla is probably in more pain that I realized before.  We are keeping Tylenol in her, every four hours, and codine at night when the pain gets a little worse, and to help everyone get a little more sleep.

As of this morning, four days post op, her left eye is noticeably better, and the blood in her right eye (which was her lazy eye) seems to have spread a little but is not as dark, this morning.  The swelling on her lids keeps going down, but her dad pointed out this morning that the top lids are still swollen enough to give her a "sleepy" look.  All in all, I'm pretty impressed with how much healing we are seeing in just one week!

4 Days Post Op

Nystagmus Hours After Eye Muscle Surgery

Here is a video I took of Makayla's eyes just hours after her surgery.



The nystagmus is very quite here, and I think that is due to the medicine, as it seems a bit more active today.  Dr. Hertle said we can expect to see the full results in two months.

Surgery & Post Op

Wow, the last 24 hours is such a blur.  I hope I can remember everything I want to share!

The night before surgery was a rough one for me.  I am so grateful to have a bed and the Ronald McDonald House, but man are they uncomfortable!  I got roughly three hours of sleep that night.  Something about sharing a twin air mattress with a one year old that makes for a terrible night's sleep!

Makayla slept pretty good, but couldn't eat that morning, due to her surgery, so she was extremely cranky, so I headed to the hospital early in hopes that the new surroundings would be enough of a distraction to keep her pleasant. 

It's a good thing we got there early, because on our way in to the hospital, there was a Indy Car sitting out front and lots of important looking people.  I paused for a minute to see what was going on, since my husband is a big race fan, and before I could even take it all in, they invited Makayla to sit in the race car and we got to meet one of Indy Car's drivers, Robbie Buhl, who autographed a hat for Makayla.  He was there are part of the Racing for Kids program.

While all this was going on, I got to talk to a nice woman from the hospital noted that we were from California, and told me about all the different places all over the world that patients come from, just to see Dr. Hertle, some as far as Bangladesh and Taiwan.  Yup, that is why we came too.

I found all of that very exciting, but Makayla was a less enthusiastic because of her empty tummy.  Once we got into admitting and to our room, things moved very quickly.  Dr. Hertle came in to see us, and answered all of our last minute questions. 

I'm not sure if he just had great notes from our last visit, but I felt like he really remembered everything about our visit in April and was excited to see my little girl again.  After visiting with all the doctors and nurses that would be a part of her surgery, a very nice doctor took her in his arms, along with her favorite stuffed animal, Violet, and back into surgery.

It must have been all the friendly doctors and nurses, but I was remarkably calm for the first hour and a half of her surgery...after that the anxiety kicked in.  I stress-ate a slice of sausage pizza, and two bags of peanut M&M's before Dr. Hertle came out and told me that everything went beautifully.  He sat with me for a while and answered all of my questions.  He said that there is only a five to ten percent chance that Makayla will ever need another surgery like this.

While Makayla was under, they also did her ERG.  As we expected it confirmed the hypopigmentation in her retina.  Along with her transillumination and nystagmus, it indicates that she has albinism just as Dr. Hertle and Dr. Alcorn (our pediatric ophthalmologist at Lucile Packard Children's Hospital at Stanford, back home) expected that it would confirm.  The ERG also confirmed that everything else about her retina is normal and healthy.  Dr. Herlte, says that the hypopigmination and transillumination are mild, which is good news.

About two hours after they took her away to surgery, I was able to join her in recovery.  She was still very groggy from the medicine, and just wanted to snuggle.  When she opened her eyes, they were perfectly still.  I knew it was the medicine, or the shock of surgery, and that it wouldn't last, but it still make me cry.

Once we got back to our room at the Ronald McDonald House, she was starting to feel some pain.  We got her loaded up on pain medicine and ate chocolate chip cookies for dinner.  Except for a few breaks for juice, she slept pretty much all the way through to morning.

This morning she woke up happy and eager to eat.  She has been a little tired, but is playful and silly.  She hasn't needed anything more than Tylenol to manager her pain.

Originally we were going to be staying through next Friday because Dr. Hertle would be out of town and not able to see her until then.  But during our talk after her surgery, he offered to come in after working in another city all day, to see her for post op today, so that we could get home much earlier.  I am so grateful and we'll be heading home early tomorrow morning!

One Day Post Op

During her post op appointment Dr. Hertle was really please with her results so far.  He says that her eyes are lining up very nicely, and noted that she is no longer using her chin up head tilt to see anymore.  He said that we will see the best results in about two months from now.  Her eyes should also no longer have the crying vampire look (His words, not mine.  I think the doctor is a True Blood fan) by then.

He would like to see her again in the next six to nine months so that he can retest her eye movements and everything, to measure her progress.

I took a video of her nystagmus last night and will post it once we get home since the internet service here is so poor.  I will continue to post updates on the state of her eyes, and her nystagmus as she recovers.

A huge thank you to everyone who has been so supportive.  Not just our amazing close friends and family, but people that are friends of friends, and perfect strangers have been amazingly supportive and offered so many well wishes.  This was very stressful for all of us and all the kind words have been so meaningful to us!  THANK YOU!

Makayla's Nystagmus Prior to Surgery

Here is a video I took today of Makayla's eyes.  This is one day before her surgery and one day before turning 20 months old.  I took this video right after I woke her up from her nap.  She was still really tired and groggy, and although, I have read that it's normal for nystagmus to get more pronounced when a person is tired, I've actually noticed that in Makayla's case, it seems to quiet it a bit.

Makayla's nystagmus can be very wild at times, and almost non-existant at others.  I have noticed some improvement over the last month or so.  I would say we have more "quiet" time than we do where it's wild.

Of course, as her eyes heal I'll post more videos for comparison.

24 Hours Until Surgery

I just got a call from the pre-op nurse confirming that surgery will start at 12:30 p. m. local time (that's 9 a.m. to all our friends and family at home) and with last meal and drink times.

We got here a full day early, because last time all of us were so out of it from the lack of sleep and the time chance that we had a hard time even remembering how to walk.  This time has been no different.  Makayla is really a terrible sleeper anyway, but she esspecially doesn't like sleeping anywhere that is not her own crib, in the room she shares with her twin brother.  We got a good 3 hours of sleep before she woke up in a panic last night and moved into my bed....where I "slept" the rest of the morning with one eye open, in fear that she would roll right out of this tiny little bed.  All in all, she got about six hours of her usual 11 hours of sleep, and I got 3, maybe 4. Compared to our trip last time, I would count that as a big success.

The twerpette is napping now, but she spent the morning making all kinds of friends.  The staff here adores her and likes to get in hugs and cuddles every chance they get.  We took a walk downtown morning to the Akron Children's Library.  It's a huge library complete with a cafe, and gift shop.  The kids area has toys to play with and a booth for putting on a puppet show.  Makayla had entirely too much fun and squealed with delight all through the very quiet library.

I'll be getting her up now, and we'll spend some time playing outside on the Ronald McDonald House patio until it's time for dinner.  Tonight we're having some chili and salad and cornbread made by the local Amish community.