Thursday, July 24, 2014

Gratitude is my name today....

Baby M had a day full of meltdowns yesterday and that was the worst day he had had since we brought him home from the NICU.  Mr. Calm-Placid-Smiling-Baby began to crawl two weeks ago.  He did that one day and began pulling up and standing the very next day.  I thought that his new abilities would make him so happy - to be able to zip around and get to toys and mischief more easily.  But he's been increasingly crabby, and as yet, all I can blame it on is teething. 

At one point late yesterday, he displayed yet another temper tantrum, arching his back in resistance to the point that only his head and feet were touching the ground when I tried to change his diaper.  End of diaper change did not signal end of "fit" however, and it was a long hour or so of screaming despite all soothing efforts, culminating in my putting him in the crib and walking away….. and staying away for five full minutes to regain my sanity.  By the clock. 

After that, I returned to him with a bottle and picked him up like he wasn't breaking windows with his volume level and rocked him and gave him the bottle and he fell asleep.  I have begun to seriously worry about what we have ahead of us.  Two weeks of increasingly intense temper fits and general crabbiness has given me an overwhelming sense of déjà vu. 

Where we laughingly used to remark that he was "channeling his mother" as he screeched and grunted with the repeated effort to roll over from back to front……  Now we look at each other and nervously whisper, "he's SO like his mommy!"  And then my brain plays "worst case scenario" game, picturing us having to remove a screaming banchee child from a public place in a year or two…. And then fast forward to the teen years.  Anger issues?  Trying to deal with such issues in a 15 year old young man, taller than we are, at the age of 74 and 79 respectively?  Aaauuugh!   (and of course, our most basic fear is that he will follow his mother's footsteps, and end up with addiction problems himself!)

When my mind goes there, I have to forcibly find something new to think about.  It is pointless to worry about something that may not even happen.  One day at a time!

I was up at Oh-Dark-Thirty (4:30AM) today with Baby M and my husband.  Nice bottle and rocking time and then he went back down to snooze and I stumbled off to the showers.  We eventually spilled out the front door, all dressed, spiffy, Baby M fed and smiling, and rolled into the Early Developmental  Assessment Center at CHOC for what was supposedly to be a three hour evaluation involving about 8 specialists.  Physical therapy, occupational therapy, nurses, doctor, nutritionist, speech therapy, social workers, etc.  Baby M took the first part of it in stride, smiling his famous calm-placid smile, acting like the most adorable baby on the planet.

And somewhere along the way, he tested out at 10 months for gross motor skills (after the therapist shut her mouth - which had been gaping when the baby she expected to be delayed and not even able to sit alone, stood up and giggled at her).  Everything else tested at 7-9 months (cognitive, receptive language, expressive language and fine motor).  His adjusted age with prematurity taken into account is 6 months 13 days. 

We are indeed blessed.  I have to believe it is the result of the therapy he has received and the excellent care and attention provided to him at CHOC hospital.  And I will say, probably we should take a bit of credit, for the hours of work we have put into faithfully practicing every single thing the therapists have told us to work on each week.  I have no wish for him to be advanced.  On time, or close to on time is good for me.

But the baby who was so far behind at 3 months when he came off the methadone (he tested at a 1-1.5 month level across the board), has advanced a HUGE amount in the next four months! 

I am grateful for all the help he has received.

And grateful that he had a bit of a meltdown at the end of the testing, during the portion where the doctor was evaluating him.  She caught that right away.  She showed me a few techniques to control him physically and give him time to settle down, and she said that we were going to need help with that.  M's frustration level and anger were WAY out of proportion to the triggers (strangers, missed nap, and being tired of the testing situation).  She took one look at me at one point and said "you are going to need to get help with this and for his sake, you will have to learn how to help him self-soothe….or it will get even worse." 

Amen, sister.  And she gave me a referral for the help, and told me to try to get Social Services to provide it, since he is not "ours" yet.  She cautioned us to get the help anyway, if it is not a covered expense, because he is truly going to need it, and even a few months would help us learn techniques to use. 

Given that my blood pressure has been sky-high lately, I think I'll make those calls this afternoon.

We knew there were challenges ahead.  I am SO grateful for the way he has been helped to catch up to his age level (and beyond!) and for the wonderful people we've met and worked with along the way.  We are truly blessed.  Now we'll work on the next hurdle!

Prayers for all our precious children, and my daughter and her husband as they sit in their respective jail cells, that maybe, just maybe, they locate some "willingness" and seek recovery. 




  1. I'm reading....such precious pictures! You are full of grace g-ma. I pray that just the right people surround you in your journey to raise sweet M full of strength and will and wisdom.

  2. I am exhausted reading this. I am happy for you that you are able to get help for him but my goodness so much of that is you and your Husband.

    You are in my prayers. What a beautiful baby.

  3. He is so precious! You truly are an inspiration and he is a lucky little man to have you as his gma! Prayers for the right people to be there for you at the exact right time and for your daughter and husband. Renee