January 2011

     God reigns that's all I can say.  Is it because we are looking to God for our strength and leading?  Yes.  A resounding yes.

       I received a lovely email from Mr. Kelley the ocularist stating that he believed we made a good decision to try the shells/conformers instead of the surgery.  He said he'd do his best to speed the process the best he could do.  Already Caleb's eye has grown from his last visit with Mr. Kelley and Liz has placed a call to see when we can make another trip in to get the next sized shell.  Caleb has had a cold for over 2 weeks and a cough and we are concerned about it, even though the pediatrician says he is okay.

      Yesterday Liz received her appeal letter from unemployment and she has a phone trial on the 13th of January.  I have never ever heard of phone trials but that is what it is.  We don't hold out much hope that they will give her unemployment as her former employer was very skillful in her offering Liz as few hours as possible so she had to quit and I guess unemployment considers 9 hours better than no hours.  However, we shall see what they say on our phone trial.  Welfare is not much support actually as Liz went there today.  She simply needs some assistance until she gets Caleb on the straight and narrow with his medical appointments and Liz gets herself taken care of medically as well.  Certainly Liz has stepped up to the plate and is such a good mommy and through her exhaustion and own illnesses manages to solely care for her wonderful son.  More to follow as the story unravels....
  
                                AFTER THE APPEAL
   I have to thank Tara for reaching out to us and helping us to understand better the appeal process.  Today's phone appeal was so revealing.  Even if Liz doesn't win the appeal and get unemployment it gave her closure with her last job and we will just trust God will provide in another way.  
   I want to say a little bit about our appeal today.  I know that God sees the beginning and the end of all things. Because of this and God's nature (of course) true justice when it comes from God can be realized.  I have had the luxury during various times of my life when dealing with disputes of different kinds of being able to see both sides of the situation quite clearly (mine and the other person's) and although that ability doesn't necessarily resolve a disputed issue it serves to provide me with peace.  Have you ever had that ability to see another's point of view even when it's in conflict with your own?  That's God.
  In that sense (having the ability to see both hearts and sides of an issue) leads me to believe it is an aspect of how God is such a fair judge of all matters and it is an aspect of God's nature that God gives us as believers when we are willing to be open to it.
     Today at the appeal, we had to state facts.  We were prepared and the employer was flying by the "seat of her pants" and also found herself being reprimanded for making inappropriate comments, responses and interrupting.  It was again, because of Tara's wonderful counsel that we were prepared and understood this appeal would be run like a court hearing. 
     God knows all the facts and we have our own perspectives.  When you listen to a court preceding it is interesting how facts tend to just emerge.  I don't want to represent that we are totally correct in our views but it is refreshing to know that Liz can at least state her facts to someone else who is unbiased (hopefully).  During the course of the hearing I discovered that Liz's boss really had an agenda and by offering Liz less hours it met with the boss' best interests.  I guess ultimately it is a boss' right to hire and fire and offer whatever hours suits them. It is my assumption that the law protects employees from being unfairly dismissed for no good cause just on a boss' whim which in Liz's case was the case in a nutshell.  Liz's boss wanted to employ another person and used Liz's pregancy as a perfect time to work this other employee (which the boss didn't really really didn't need in) and Liz out. 
     How can I know what it's like to be a boss, I've never been one except in my own home...lol.  So, I guess what I'm saying is all is good with us.  Onward now to see what God has in store for Liz and Caleb.  Once again...MUCH THANKS TO TARA!!! 

December 2011

What a month!  

December 5th- Early Intervention comes PT- 8th time
December 6th - Appointment in Philadelphia with Will's Eye- Dr. Levin who is not happy about the progress of Caleb's eyelid raising with the ocularist.  He calls Mr. Kelley with instructions to speed it up or else!
 December 8th-Off  to Fort Washington Pennsylvania to meet with Mr. Kelley for another fitting..Caleb's third shell.
Liz tries with all her might to get the shell in but to no avail so back to Fort Washington again to meet with Mr. Kelley who worked with Liz to get the shell in.

December 13th-First day at Medical Daycare and an emotional parting for Mommy.  Caleb did great!

December 14th- Back to Fort Washington Pennsylvania to Mr. Kelley who tried yet another new shell. It took from11 to 4 to try to get this new one in.

December 19th- Back to Mr. Kelley for a 10:30 appointment where he took an impression of the eye.  That involves inserting some kind of white goop into the eye, placing a shell on top of it and waiting a minute until it hardens while Caleb screams and screams.  Then taking out the shell and the goop and having an impression of the eye so another shell can be made.  After trying until 4:30, where Mr. Kelley says to us.  "I am so sorry, I just can't make a shell large enough to please Dr. Levin. So, home we go with the old shell very sad indeed. Exhausted beyond belief.

December 20th- Philadelphia, Will's Eye -we meet with Dr. Murchinson, the eyelid specialist.  She informs us that Mr. Kelley cannot do what they had hoped and our option now is to have Caleb's eyelid attached permanently to his eyebrow.  

Now it is decision time:  Do we opt to do what the surgeons at Will's eye want?  Permanently attaching Caleb's eyelid to his brow?  His sweet little face will most likely distort over time requiring possible facial reconstruction surgery...OR 

Do we opt to just continue the shells at a slower pace which could not possibly raise the eyelid fast enough to permit light into the eye so it can see.  Mr. Kellley isn't sure he can EVER raise the eyelid to the satisfaction of the doctors at Will's eye. 

We were informed of glasses that have a kind of hook on them to hold up the eyelid in adults but the opticians at Will's eye have never made them for an infant. 

The doctors at Wills tell us time is of the essence.  Do we allow time to pass to continue working with the ocularist and the shells hoping that God will heal this baby's eyelid over time or miraculously or do we disfigure this precious little baby who will never again be able to close his eye?

What would you do?

The Beginning...diagnosis and recommendations and miracles....

     On July 5,2011, I became the proud grandmother of another grandson, Caleb Joseph.  Immediately marring that happy event was the announcement that there was something wrong with Caleb's eye. We asked people to pray immediately.  When I was able to inquire of a nurse I was told that perhaps there was not an eye behind the closed eyelid that had not opened at birth.  We waited with trepidation and concern until some "hospital official"  told us that there was an eye just that it was very small.  That was miracle #1  
      We asked if an eye specialist could be called in and they told us that would have to be done after Caleb was released.  A day or so later,  we were told by the neo-natal doctor he had located a doctor to come in and check out Caleb's eye.  That was miracle #2.

    We first heard the term microphthalmia from this eye specialist they called in to investigate Caleb's malformed eye after his birth.  What does this dreaded word mean?  Borrowing this from another website here is the explanation. 

What is microphthalmia?

"Microphthalmia is an eye abnormality that arises before birth. In this condition, one or both eyeballs are abnormally small. In some affected individuals, the eyeball may appear to be completely missing; however, even in these cases some remaining eye tissue is generally present. Such severe microphthalmia should be distinguished from another condition called anophthalmia, in which no eyeball forms at all. However, the terms anophthalmia and severe microphthalmia are often used interchangeably. Microphthalmia may or may not result in significant vision loss.
People with microphthalmia may also have a condition called coloboma. Colobomas are missing pieces of tissue in structures that form the eye. They may appear as notches or gaps in the colored part of the eye called the iris; the retina, which is the specialized light-sensitive tissue that lines the back of the eye; the blood vessel layer under the retina called the choroid; or in the optic nerves, which carry information from the eyes to the brain. Colobomas may be present in one or both eyes and, depending on their size and location, can affect a person's vision.
People with microphthalmia may also have other eye abnormalities, including clouding of the lens of the eye (cataract) and a narrowed opening of the eye (narrowed palpebral fissure). Additionally, affected individuals may have an abnormality called microcornea, in which the clear front covering of the eye (cornea) is small and abnormally curved.
Between one-third and one-half of affected individuals have microphthalmia as part of a syndrome that affects other organs and tissues in the body. These forms of the condition are described as syndromic. When microphthalmia occurs by itself, it is described as nonsyndromic or isolated."




     The ophthalmologist that was called into the hospital to examine this malformation could not see the pupil or behind it because there was a film over Caleb's eye which prevented the specialist from seeing if there was vision there or to determine what kind of microphthalmia Caleb had.  He advised us to seek a pediatric ophthalmologist within the next 2 weeks.  I called immediately and got an appointment with Dr. Rousta in East Brunswick, NJ.  Caleb had other issues at birth as well, he had a low platelet count and anemia, so we were told to see a hematologist as well.  Our local clinic called Dr. Ann Perl in Long Branch, NJ for us to be followed by.  We met Dr. Perl on July 19th for the first time.  Caleb had several blood tests before actually meeting this wonderful doctor.  At their first meeting she declared his platelets to be "fab oo lous!"  Miracle # 3  She did tell us that if the improvement did not continue there was a possibility of transfusion.  
    We traveled to meet Dr. Rousta (a pediatric ophthalmologist) the very next day.  This visit was the most traumatic of Caleb's short little life.  She performed his first (that we witnessed) eye exam where they used forceps to keep his little eyes open so she could exam them. She also saw the film over his eye and could not determine if there was sight and said we needed to take him to see a specialist.  (We thought she was a specialist).  The way we figured it, we were meant to see her b/c she was able to get us an appointment with the world renown Dr. Levin at Will's eye.   That was miracle #4. 
      As it turned out Caleb also suffered from acid reflux and the day after his meeting with Dr. Rousta, he met Dr. Masa who changed his formula to an AR brand due to constant throwing up, screaming for hours and having isolated times of stopping breathing after throwing up.  His formula was changed again to alimentum before we finally saw an end to his stomach distress.  Miracle #5
     We had another visit with Dr. Perl (getting confused yet?.... Imagine us driving a sick mommy and a tiny newborn to all these doctors) where she declared Caleb was continuing to make progress but his iron was still not where she wanted it to be.  
      Dr. Levin's first visit at Will's Eye was on August 4th.  At this time Caleb was only 1 month old.  Dr. Levin could not really examine Caleb's eye as the child screamed bloody murder so Dr. Levin scheduled him to be put to sleep and would examine him then when Caleb was 2 months old. After trying the exam however, Dr. Levin turned to Liz and I and said, "Who said there was a film on this baby's eye?  There is no film."  Miracle #6 

     To this day we do not understand how Dr. Levin is being paid because Caleb's coverage is for NJ only and Will's Eye Hospital is in Philadelphia. Dr. Levin told us that he accepted his post at Will's eye under the condition that he could see whomever needed him regardless of their ability to pay. That would be us...no way to pay for this service or surgeries. That was miracle #7.
     In the meantime we had a 5.8 earthquake, Hurricane Irene where we lost power for 5 days and another visit with Dr. Perl who basically discharged Caleb from her care as his anemia and platelets were all "fab-oo-lous!"  That was miracle #8.  We loved Dr. Perl so much and her "little" accent and the way she pronounced "fab-oo-lous" has since become a saying here that makes us smile.
     Perhaps surviving the earthquake and hurricane (which basically missed us) should be noted as miracles 7 and 8 or 9 and 10???...but since they are "acts of God' we shall just leave them that way.
       Visits to doctors continued:  We traveled to Philadelphia to meet with a geneticist who ordered a kidney scan and blood work.  Just when would we do these things? We still haven't gotten to them yet.  What followed after the geneticist was another exam of Caleb by his local pediatrician to insure he was healthy enough to be put to sleep and then off to Will's eye to actually be put to sleep and examined. 
      Thankfully, Liz had a place near the hospital to stay with Renee and Jeff who treated her like a queen and Caleb actually slept the night which was nothing short of a miracle so we called that miracle #9.
      After miracle #9 the procedure at Jefferson Hospital was a complete nightmare as the surgery was to take place at 9:30 and Caleb didn't get taken into surgery until 3.  Poor starving baby and poor us who walked and tried to coddle him.  However, it was a happy Dr. Levin who came out of the surgical procedure to tell us that Caleb's eye was fully functional and that he wanted a cat scan done of his brain the next week.  Miracle #10
      After the cat scan the following week (which went much smoother than the last Jefferson surgery) it was determined that Caleb needed to see an eyelid specialist the next day.  So, we met Dr. Murchison, who would defer to the ocularist who we were instructed to see to make a shell to stimulate the eyelid's growth and prepare for the eye to see!!!
     The next week we met with Dr. Vates who specializes in pediatric urology.  Caleb could not be circumcised when he was born because of his low platelet count and anemia.  Dr. Yates said no surgery until Caleb is 6 months old.
       We met with Kevin Kelley the ocularist on October 4th for the first time.  He agreed to make a shell for Caleb and scheduled an appointment for us to return on October 19th for its insertion.  Uncle Phil accompanied Liz and Ron to the ocularist and was instrumental in getting the shell in for the first four days or so. We questioned Mr. Kelley how he was getting paid and he said "Don't worry about it."  But we did and do....still Miracle #11 
     Even though the shell was a miracle the process of shell insertion was a most taxing and tolling time on Liz as she watched Caleb be "tortured" and scream while Phil and she struggled to insert the shell.  With miracles often come the trying of the soul and the building of faith.
       In between the doctor's appointments for Caleb, Liz had her own medical and personal issues. While Liz was on disability for her pregnancy, she was replaced at her place of work and offered a mere 9 hours of work upon her return forcing her to quit because she could not afford the care for Caleb with such few hours of work.  Unemployment declined to help her so she appealed their refusal to give her unemployment and still to this day has heard nothing from them.  She applied for welfare and was denied and is still appealing that as well.  God has been good to her in providing her with so many friends and family members who send her money periodically to help her out during this time.  THOSE ARE TOO MANY MIRACLES TO EVEN NUMBER!!!
   In the meantime, Early Intervention called Liz and set up an evaluation of Caleb.  When a child has a birth defect they are notified and try to intervene in the family to help with early care and instruction for the family concerning the child's care.  They offered us such invaluable advice and scheduled to come here to the house to give Caleb physical therapy and sight therapy.  We also learned of a wonderful facility called Medical Daycare which offered services to parents with children with various medical difficulties a place for them to safely put their children in day care.   To qualify a thorough and most rigorous evaluation procedure must be done to determine if a child will qualify. 
     On November 30th, we got a call that Caleb was accepted into the medical daycare and Caleb had his second shell fitted.  Miracle #12

Next post:  Will's eye Dr. Levin wants the eye opened and the eye lid is not being raised quickly enough so the pressure is on.