When Babies are Called Home

I read some sad sad news today from Facebook.  One of the Apert families whose journey with their almost three year old son I was able to follow, lost their little boy suddenly while he was asleep.  I can only assume that the cause must have something to do with breathing issues that many Apert kids experience especially during their sleep but I have yet to know what the real story behind is.

Despite the fact that I have never met this family in person, the very thought of losing a child saddens me.  It saddens me more because as a mother of a child with Apert Syndrome, I find myself being able to relate with these "strangers" with whom we only share a virtual connection with.

This afternoon I've constantly been trying to dry my tears just thinking about Zane and what his family must be going through.  I know that no words will ever be enough to comfort his parents and so I say a silent prayer for them, thinking at the back of my mind that it could have been Nina.

No one wants to let go of their children, but when God calls them back into His fold, we are reminded that these children have only been lent to us by Him and that we are their earthly guardians/parents and that He is their Heavenly Father.

I don't want to live in fear over things that could happen and so I force myself to be cheerful, not to be affected by this loss and trust in Him that for everything He has His purpose.

Meanwhile, I ask that you say a prayer for little Zane whom I know is now back with his Father, back to being an angel that he really is.  Please pray for his parents too, that they may find strength during these times and that they be comforted with happy memories of the life that that was shared with them.

Asking for EARnest Prayers

We had originally planned on scheduling Nina’s 2^nd syndactyly release right after hub’s birthday especially since we were having a long weekend that time, not to mention the school semestral break.  Unfortunately, she developed a bad cold which progressed into a cough the week before the scheduled date so we had to postpone again.  Her doctors are adamant that whenever a surgery date has been set, Nina must be clear of any coughs or colds two weeks before the surgery date.  This is mainly to ensure that no complications would arise during the surgery since they need her nasal passages to be clear as for the general anesthesia.

Recently, the kids had been diagnosed with Allergic Rhinitis and Asthma (sadly both of which were inherited from me) and both of them have been placed on maintenance medicines just to avoid any episodes particularly during the pollen season and the wonky weather.   It was during one of those check-ups with the ENT that the doctor pointed out that Nina had an ear infection perhaps connected with her never-ending sniffles and the cough that went with it that time as well. 

For a person with Apert Syndrome, it is typical for the midface portion to be hypoplastic  or underdeveloped.  That being the case, when ear infections happen, sometimes the liquid/pus in the ear is not fully drained (because of the structure of the ear canal) and that could affect the person’s hearing.  To resolve the problem, tubes will have to be surgically placed in the ear to allow drainage. 

The doctor then requested for Nina to undergo several hearing tests so she could determine if tubes would be necessary in her case.  Fast forward months later, we realized that the tests were never done!  One was because hubs and I discussed that we should arrange for the test to be covered by our HMO but because the requesting doctor was not part of the network, we had to look for one that was.  But things started coming up and before we knew it, 5 months had already passed.  We returned to the first doctor and sadly that the infection was still there.  So now, the tests are imperative and urgent but I am still hoping for a miracle. 

Honestly, I don’t want Nina to have to go through any more operations.  I also know that the tubes in the ear can sometimes get clogged so it’s possible that the surgery isn’t just a one-time thing.  So while I’m scheduling appointments with an accredited doctor, I am also praying that the infection dies down and that the doctors will see that there really is no need for tubes to be placed in her ears.  Will you join me in praying for that please?