Six Months Post Cleft Lip and Palate surgery

It's hard to believe Jacob's surgery was 6 months ago!  Aside from the first two weeks post-op, the time has flown!  We are now in that sweet spot between surgeries where we can relax, enjoy each other, and work on development.  So, here is where we are six months later:

Feeding: If I take a step back and look at the big picture, Jacob has certainly made progress.....but it has been slow.  We still have to puree and mash most things but have found that if the edible item can be mashed with his tongue, then it is able to get down.  He's not chewing anything.  We finally decided to push for an outpatient speech referral through Cincinnati Children's Hospital with a focus on feeding.  We are doing this once a week and our homework includes "chewing" on a nuk brush dipped in something like mashed banana or peanut butter, and working on Jacob biting on items from the side if his mouth.  His therapist said he has all the components needed to chew....lateral tongue movement, and biting motions but he's just not putting it all together. Most of the food bolus just sits on his tongue and does not get pushed to the side.  He seems to be making gains in strength but if given the choice, will always pick the food that is easiest to get down with the least amount of work. 

Speech:  Along with our outpatient speech therapist we see once a week, we also have early intervention coming into our home once every 2-3 weeks.  She is wonderful and gives me great ideas on "playing with purpose".  I call her the pied piper because she can bring vocalizations out of Jacob better than anyone else we have been with.  He loves it when she comes over!

Playgroup:  Because Jacob is receiving early intervention, he can also attend their weekly playgroup.  This is an hour of sensory activities, fine motor activities, singing, and reading time. I have loved connecting with other Mom's in the group and watching their little ones make progress.  I am amazed at the challenges of being the Mother of a special needs child.  Some of these women are everyday heroes and fierce advocates for their little ones.  I will be sad to say goodbye to them when Jacob turns three next March.

Gross Motor Development:  Jacob continues to be in a gross motor class called Tumblebees where he gets to challenge himself with physical feats.  At any given class he will practice crawling through things, walking across balance beams, rolling, and swinging. You just never know what the crazy Kids First Gym ladies will think up for the kids to do in their circuits.  It has been a wonderful place for both my children to feel loved, encouraged, and challenged to do things outside of their comfort zones.  We have also started some work with a local chiropractor that is versed in DNS (Dynamic Neuromuscular Stabilization).  "What?", you ask.  From their site (Prague School), they believe "the nervous system establishes programs that control human locomotion, which is comprised of posture and movement. This ‘motor control’ is largely established during the first critical years of life. Therefore, the “Prague School” emphasizes neurodevelopmental aspects of motor control in order to assess and restore dysfunction of the locomotor system and associated syndromes."  We are only two visits in but the chiropractor and I are trying to identify any dysfunctional movement patterns Jacob has and help "rewire" his neuromuscular system to do things correctly.  It sounds complicated but can actually be done with some very easy manual cues to Jacob's body while he is doing his regular daily activities along with some reflex stimulation. 

Ears and Eyes:  We did have a vision screen on Jacob as there is an eye condition that has been associated with cleft lip children which can result in a detached retina.  The initial screening was negative but Jacob will need to be followed every couple years until he has fully matured as the condition often manifests itself later in development.  During that same week, we were shocked to go in for our ear visit and alas, Jacob had lost a tube!  We were not expecting this wrench in our plans!  Our surgeon decided to give Jacob a couple months off.  We will return at the beginning of August to see if he will need another tube put in his ears.  I know the procedure is minor but am not looking forward to handing him off to be placed under anesthesia again.  

Teeth:  We have great news on this front!  Jacob has two front teeth!  The "baby teeth" never emerged but he has two adult teeth waiting to come through.  Jacob's pediatric dentist saw them on xray at our last visit!  We've been told to save up now for braces!  Gladly! 

Verbal:  Our surgeon told us to expect very little progress in expressive speech before our next surgery for the P-flap.  While not all cleft children need this surgery, our surgeon prepared us that he felt it was highly likely Jacob would have it.  Although he has very little expressive speech, we have no trouble communicating together between sign language, sounds, and the minimal words he does say.  Should we need the P-flap surgery, that will be done summer of 2014. 

Making headway.....

We have had lots to celebrate over the last few months. 

• Jacob is now able to independently come up and tell us when he needs to eat (through sign language.)  Previously, he would do things to get negative attention and show signs of anxiety when he was hungry but now he is finding his voice. He finds it especially fun to tell us he is hungry when we finish our bedtime routine and are just about to put him down for the night.  Smart kid!
• We are finally on the head curve!  As of Jacob's 2 year follow up, we are back on the head circumference curve.  All those foods we have been giving him for "brain development" are working!
• Jacob came up to me about a month ago asking, unprovoked, for a kiss.  It hasn't happened much since but it was a special moment.
• We are working on getting Jacob to express his needs through signing or words.  He is very good at playing the tattling little brother role and instead of whining and stamping his feet to get my attention, we are working on him calling me "mama."  It is far from perfect but we are slowly changing these patterns and helping him find his voice.

Looking back, I can see that though the road has seemed long, we are making steady, forward progress.  Some days we make leaps and other days we take steps back.  Dr. Purvis who wrote, The Connected Child, talks of attachment being like money in the bank.  We work hard to make deposits, and build up our attachment wealth.  Then, there will be other days when we fail or fall short of what our children need and we have to withdraw from the account.  The goal is to stay and move forward in the positive.  I like this analogy and when some days don't go the way I wish they would, I can be thankful I have made so many other deposits. I feel confident that in the end, we will retire with immeasurable wealth.