A little perspective

The recent inactivity is only virtual I assure you.

Mila has grown so quickly and before we knew it she was already 6 months old. It IS amazing how quickly they grow. You always hear that, and you are sure that it must be true, but not until you feel it coursing through you...time sifting through the fingers of your own hand, is it real enough to almost hurt.

Our daughter is doing VERY well. Most of you that have reached out to us will not be surprised to learn this, but it is nice to report all the same. She is doing all of the things the doctors want to see and none of them they don't. This, I guess, doesn't mean we are out of the woods quite yet, but at least we can stop to admire the foliage and be fairly certain that Mila is enjoying it too (by the way she grabs it and puts it in her mouth)

Mila had ear tubes put in two weeks ago. She had been holding on to a buildup of fluid behind the eardrum for almost two months and couldn't shake it. For the doctors this was cause enough considering that she could develop difficulty hearing from the fluid and they didn't want for another one of her senses to be strained right now. So back to surgery we went.

I must say though, that this is a 15 minute surgery. FIFTEEN MINUTES...literally. We barely had enough time to fall asleep in the waiting room before the doctor was waking us up and congratulating us on how relaxed we were. It made me realize that this is, more often than not, the first surgery that an infant goes through and probably has a lot of parents tied up in knots. Totally understandable, because surgery IS nerve racking. Perhaps this is one of the reasons that we should be glad. We truly are lucky to have all of this experience under our belts so early.

Priscilla and I were looking at pictures tonight of Mila at 2 months, 1 month, with glasses, without them...all of the pahses she has gone through already, and just now, are we beginning to feel like we are through it, we have come through the other side. Its a good feeling.

Thank you for being there, thank you for caring and praying and loving all of us. We will never forget it.

Keep tuning in and we promise to do better about updates,
TP&M

Smile For Us

Mila seems to be happy with the newest vision arrangements.

Over the past few days we have ben adjusting to the contact lenses along with Mila, although I am sure it is more of an adjustment for us than for her. We're learning that it takes a bit of trickery to put them in and brute force to get them out.

Her track record for one week is one lost contact (found the same day) and six days of vision improving days with them in.

For the moment things feel normal, and I am learning that normalcy (or something closer to what we had previously believed normal to be) is of a fleeting nature, and that we should hold those moments up in celebration when we have found them. Celebrate with us if you would. Thank you for thinking of us and thank you for reading.

We'll keep you posted,
T, P & M

3, 2, 1...

So many basic functions of our lives, even vital ones, we take for granted.

I have tried to imagine what it would be like to wake in the morning and be unable to see my surroundings clearly. This, I know, is an impossibility for me, because I have been blessed with the gift of uncorrected vision.

This, however, has been Mila's reality every day of her life. Of course I know that, as young as she is, it is questionable what she would have been able to see up to this point. Still, it is hard to imagine what she must have felt as we slid the glasses around her tiny head and down over her eyes for the first time. She let out squeals of what seemed to be joy, wonderment, relief. As anyone that has worn glasses would know better than me, the vision around the edges of those lenses is far from perfect and they are prone to slide of the nose's tip.

Suffice it to say that Mila's journey towards learning to see has been chock full of challenges, albeit unbeknownst to her.

This past Monday marked another triumph in the tiny life span of our daughter. We took the, now, short trip over to see Dr. Freedman at the Duke Eye Center. This time Mila would make yet another doctor for something unfathomable for most, she was to be fitted for contact lenses!

Hard to describe is the understatement of the year for the process that it took to get those first lenses in her eyes. The Ophthalmologist's assistant dug her fingernails in and separated the eyelids a mere arm's length from my face giving me the best/worst view in the house of what little Mila was going through. Of course she cried, who wouldn't, it gave me flashbacks to scenes from "A Clockwork Orange", and these were just for testing purposes the doctor told us.

Next we went over to see the good doctor and, in line with our hopes and expectations, Mila's eyes were looking good and she was improving in her tracking of objects. A thumbs up from Dr. Freedman and we were back on our way to get the right lenses put into Mila's eyes. This time, Priscilla's small fingers would do the work to get them in. I was nervous, but if she was it never showed.

To our surprise, and the ophthalmological assistant's amazement Mila didn't blink, didn't squirm, didn't cry or move and inch when her mother's hands deftly inserted the delicate material into her eyes.

There is a trust inherent in the relationship between infant and Mother that no one outside of that relationship could ever understand. It is as if Mila knows instinctively that Priscilla would never hurt her. Outside of the bond that is formed during the nine month pregnancy, it seems that there is a closeness and comfort that only mother can provide and nothing that mother does is questioned (at least for now...more to come on that subject once we hit age 13)

We have come home and realized, slowly, that those little glasses that we have come to love, are now an unnecessary relief. As strange as it may seem to anyone else, I miss them. I miss seeing her eyes magnified to a point where her expressions were instantaneously recognizable, I miss that unique look that my baby would give me through those convex lenses. We are slowly coming to know her real face, the real size of her eyes, the real length of her incredible eye lashes. All of this is new, just as it was when she was born.

The most comforting thought, for me, is that now she no longer has that moment of dull,potentially confusing blurriness at the beginning and end of her days. For now, that is enough and I am content.

The contacts, as I am sure most of you are wondering, will stay in for 7 days and 6 nights, be taken out for cleaning overnight and then go back in in the morning. The doctor said that one pair should last for 3 to 6 months and then we will need to replace them.

Thank you for keeping up with us. The days have been long at work and caring for Mila for all of us. We will continue to post here and hope that all of you are well. Thank you again for all of the support and well wishes, we would not be where we are without them.

T, P, & M

Positive and Negative Space

We've been thinking in black and white of late.

We have been able to focus on helping Mila focus since the last doctor's visit went so very well! The first thing that Dr. Freedman noticed upon walking in the door of the office was that Mila's eyes were so still. Previously they had roamed the room, not really able to stay focused on any one thing. Now, she is slowly catching on and beginning to hold her eyes in one place. A monumental hurdle has been crossed. Of course, where one hurdle is there will be more to come before the race is over. But once you catch your stride, things get easier and the rhythm of the run sets in.

On all other fronts Mila's eyes are doing well. The outer rim of the lens in her right eye is staying stable, no sign of closing completely, but we will remain vigilant. For the first time the pressure in both eyes was in the single digits, a good thing on all accounts and glaucoma seems to be out of the picture for the moment. It was really amazing to have a doctors visit where everything was positive, no ifs, ands or buts involved. Seems like a small thing, but it isn't.

In two weeks time we will be going back to Duke to have Mila fitted for a tiny pair of contact lenses, who knows, the tiny pink glasses we have come to love may be a thing of the past. In all honesty we didn't dare to ask that question, we were just satisfied with the thought of three weeks at home, only two drops a day, and the possibility of some respite from the road.

These weeks have been hard enough with Mila starting day care two days ago and all of the adjustments that come with that. But I digress...

This world is constructed of black and white, the combination of all colors and the lack of them. Everything is encompassed in between the two. Life would not be life without their contrasts. We appreciate the light because we have seen the darkness and positives wouldn't be positives without having gone through the negatives. We all need to see life, developed in reverse, in order to be able to pick out those things that make us satisfied with the way things are indeed.

For now we will go on playing with Mila's black and white blocks and tiles, encouraging her to follow the black and white that are sheep on her mobile as they revolve, relishing the shadows cast by the afternoon sun, and enjoying the stark difference between the night sky and freshly fallen snow on the bushes. We will continue to notice those things on walls and shelves of our world, inside and out, that we had long forgotten which could provide a glimpse of contrasting delight to our little girl.

Thank you for reading. Thank you for caring. We can always feel it, and we will always feel blessed.

We'll keep you posted,
TP&M

A Waxing of the Crescent Moon

Dear Friends, Family, Loved Ones and All Others,

Since the last blog post there has been little activity on the medical front. We have been enjoying spending time with Mila and honestly quite involved and busy with our own respective jobs. We work daily with Mila on learning to focus and begin to track objects. We have a set of black and white tiles with objects (animals, faces, shapes, etc.) along with other toys and household objects (including a painting by Mr. Mark Malmgren himself) that we put in front of her daily in hopes that it will help.

That job, if we are honest, often feels fruitless and sometimes even futile, but then there is a bright flash of brilliant light and happiness as we see what we believe is focus and engagement or hear the tiny squeals of delight as Mila suddenly enjoys what we have put in front of her and begins to squirm and wave her arms and legs.

We also have been keeping a close watch on Mila's right eye. As expected, and against all of our hopes, we are beginning to see more of the shelf creep into the lower corner. It is not only more visible but does seem to be closing. Unless it stops...this will inevitably mean another surgery at some point in the near future. We do not believe, after what we have learned from the doctor, that this progressive closure will cease once it has started. We know that miracles do happen, and that we still have some time before an operation is the only resort.

It seems that once again we are reminded of the cycles that each of our lives go through, and that none of us is immune to their effects. Just as the moon is slowly lit and becomes brighter and whiter with the days passing, so to does its surface return to darkness. I am reminded of that as I look into Mila's eye and watch the crescent moon shaped shelf waxing slowly into a full moon.

Sometimes we wish that these things would pass by quicker than they will, we want to rush them, move through them and on to the other side sooner than we can. As I look into Mila's eye I see that there is no slowing the moon's progress, and there is much despair in that, but there are things far worse than a full moon, and even an empty night sky can be disorienting and frightening.

Our cycle will pass in its own time, we will go from night to day, and Mila's vision will eventually improve, with the help of God, the Universe, your love, and her parent's open hands and hearts and minds.

Thank you for keeping up with us, and for keeping us in your thoughts, and prayers. We will let you know what we find out.

Until then, please keep reading,
T,P,&M

Mila With The Moon In Her Eyes

Hello to all!

Just a quick note here to let everyone know that Mila had a check-up yesterday and It was the best prognosis so far! Both of her eyes looked "excellent" the doctor said. Her pressure was up just a tad in the right eye @18, but she suspects this is a fairly normal side effect due to the continued steroid drops and not a complication (glaucoma) at this point.

The shelf in her left eye is still closing, but the doctor said that its movement is not noticeable since her last check-up. Right now it is almost as if Mila had a crescent moon peeking out from the lower right edge of her pupil, I'm personally kind of partial to that imagery.

Overall we are very pleased. Finally the breather that we needed. Dr. Freedman said that she would be comfortable leaving her in our care and having a check up at a two week interval this time, unless we see something drastic in the right or left eye. It is really amazing that two weeks would seem like a break. Honestly we have been going on adrenaline and the best interests of Mila for so long now that we hardly noticed the harried pace of doctors visits or its effects on us.

For now, we are all resting and breathing just a little bit easier. We can not thank you all enough for the well wishing, the prayers and the love. We hope that you will continue to do all of those things and keep Mila in your thoughts. At this point we are not out of the woods but this sure does feel like a clearing to me.

We will continue to keep you posted. Thank you for reading, from all of us.
TP&M

I can see clearly now...

Every time we have driven to Duke Eye Center in Durham it has rained, without fail, it has rained. Several times we have both thought of this as symbolic, the metaphorical representation of the cloud hanging over our lives since we learned of our daughter's cataracts. Every time we have driven to Duke Eye Center, we have wondered when the sun would come out. But that is part of the point, that there has always been sun after the rain, and there will continue to be for the rest of our days.

Today Mila had her third surgery in the morning. As you already know this was to open her left eye (the first one operated on) as its lens had closed completely.

Priscilla and I were sleeping in the waiting room when Dr. Freedman awoke us with the only words that we would want to hear. "It went beautifully, your daughter is big and robust and wakes up immediately after surgery her pressures were normal and her corneas were clear." At least we have that, another successful surgery under our belts, one more wall knocked down on the way to a clear view of the outside world.

Of course, she reminded us, there are no guarantees. The right eye is beginning to close as well, albeit at a much slower pace than that of the left and there is a possibility that, sometime in the future, we will have to go in and reopen it surgically. Dr. Freedman explained that the closure of the eye is one part contraction based closing (as in the aperture of a camera lense) around the hole made by the removal of the cataract, one part vitreous material, and (once the opening reaches a certain diameter) one part re-growth of lens/cataract cell material that spans the gap to close the eye completely. We do know now that in her years of experience she has only had to reopen an eye more than once a handful of times.

We also know that she was able to save enough of the lens material around the edges to leave open the possibility of an Intra Ocular Lens implant in the future.

We still have a check up tomorrow morning, but we left the hospital today with instructions to take care of our otherwise healthy little girl, watch her right eye for signs of closing and never forget that rain does not begin without an ending in sight. As we sat in our hotel room this afternoon our room was bathed in the warmest light we have felt in some time and only briefly blocked by the clouds that still raced past in the sky as they often will in winter.

Thank you all for caring, reading, hoping and praying.

We will keep you posted,
TP&M