Challenges and Blessings

2012 appears to be a very challenging year for us but so far, all signs show that no matter what happens, everything will work out somehow.

Janina has been attending speech therapy classes especially since she’s very much delayed on this aspect. The pediatrician also told us that she appears to have verbal apraxia.  According to www.apraxia-kids.org, Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. The root word "praxis" means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

One of the challenging aspects of her attending speech therapy is actually the cost as a one hour session costs PhP 700.00 or approximately $16.00.  We meet the therapist twice a week so that’s roughly around P5,600.00 or $127.00 a month. On top of that, her big brother will be going to the big school by next school year and because we value quality education, we opted for a school whose tuition fee does not exactly cost peanuts.  So far, we’ve been able to make ends meet and I know that with His grace, we will survive the year. 

Inspite of these challenges, we have so much to be thankful for.  When Janina was born, she was diagnosed with PDA and ASD.  Simply put, the doctors found that her heart had a hole which they hoped would eventually close by itself.  Recently, the pediatrician noticed that Kuya’s chest seemed to be getting bigger, somewhat like that of a pigeon’s and she also noticed he had a heart murmur.  So we brought the two to the cardiologist (especially since it was time for Janina to have a follow up check-up).  The doctor recommended that they both get an ECG as well as a 2D Echo.  Upon hearing those words, my mind starts computing costs once again particularly because we  were advised that these would not be covered by the health insurance because they fall under congenital conditions.  But again, we tell ourselves that the most important thing is still the health of our kids and we go on with the procedures for both. 

When the ECG was done, the pedia said that everything seemed to be okay (breath of relief) but that she wanted to have the 2D Echo done just to be sure.  Today, we had the 2D echo done for both and amazingly, both of them have been issued with a clean bill of heart-health!  Praise God!!!  I’ve been praying and praying over this and I’m so glad that our prayers were answered.  My heart and my mind tell me that our answered prayers are all with the help of Mama Mary.  Maybe it’s because I am now reading the third installment of Mama Mary and Her Children by Fr. James B. Reuter, or maybe because while we were waiting for our turn to have the 2D echo, who talked to me about Mama Mary, the Bible and all the conversions he heard about. 

Yes indeed, it’s another Mama Mary miracle for me and I’m sure that there will be more to come :)

Hands

Syndactyly is one of the characteristics of a patient with Apert Syndrome.  Simply put, it is when the fingers and toes are fused together.  While the bone structure underneath the skin may (or may not) be in tact - meaning there are bones for the fingers or toes, they are fused together by the skin.  There are actually several types of syndactyly with some hands being referred to as rosebuds.

Nina's hands were one of the first things that caught the eye of the doctors when she was born.  I vaguely remember my OB telling me that her hands looked like they had mittens on.  It is ideal for Aperts patients to have the digits or fingers separated before they reach 2years old because it is at that time when the child really starts holding/grabbing things.

We meet with Nina's hand surgeon today so that we can finally schedule the separation of her fingers which at this point she is eager to start using.

Our doctor, a plastic surgeon and hand specialist is suggesting that he only separate the thumb for practical reasons. But to this day, we are adamant that we want Janina to have the semblance of a normal life as much as possible.  She's a girl and I'd like her to have the chance of wearing rings later on, of playing the piano and of typing albeit in whatever manner/speed that may be.  I refuse to consider my daughter as a disabled child because she is not.  She is special - that is for sure, but she is definitely not disabled.  The doctor says that he prefers to consider function rather than aesthetics.  According to him, having the additional fingers would not improve the function of her hands that the most important thing is just for her thumb to be separated.  While I respect his opinion, I do not want to put a limit to my daughter's capabilities, more so to what God is capable of doing in my child.  I believe that if the Lord wants Janina to have full use of her fingers after surgery, He will allow it.  If my daughter wants to be a concert pianist - she can be one, regardless of how her fingers would look like.  The most important thing is for her to have all five fingers (of course if that is possible).

So armed with prayers to Mama Mary, Blessed John Paul, and of course to the Lord Almighty, we will face the doctor today to inform him of our decision -- that we want our daughter to have all five fingers if her bone and nerve structures will allow it.

Wish us luck!  We will definitely keep you posted.


~@~

PS... It's amazing what prayers to Mama Mary can do!  We met with the doctor this afternoon and he greeted us by simply asking us what we had decided upon.  He further added that he will do whatever we want and that he just wanted us to be fully aware of everything so that we would not expect the impossible.  For some reason, both hubs and I left his clinic feeling pleased with the doctor.  Yup, another answered prayer courtesy of Mama Mary!


We've scheduled Janina's surgery for June 7th at 7am (Manila time).  Please do not forget to keep Janina and her doctors in your prayers.