Thursday, May 9, 2013

Team Jacob: Four Months Post Cleft lip and Palate surgery



Many of you reading our blog have wanted an update on Jacob.  Here are some specifics for our family, friends, and for the new families in our lives who have also adopted children from Weinan.  Below is more than you will ever want to know about how we are doing post adopt 6 months and post surgery 4 months: 
  • Drool (I told you it was more than you ever wanted to know): When Jacob first came home, we had to have a wipe everywhere we went.  About a month after surgery we began to notice his drool had significantly lessened and at this point, we are noticing it maybe once a day, especially when he is leaning forward such as in looking at a book.  We are trying to draw his attention to it when he does drool so that he has an awareness that it is on his face.  We do this by telling him it is there, asking him to wipe it, or modeling on ourselves how to get it off.  Jacob is clearly having more oral awareness.  Not only do we see his tongue starting to explore the outside of his mouth, but he seems to have better awareness when his mouth is dirty.  Just a couple weeks ago Jacob had gotten down from lunch and must have had some food in his mouth that dribbled out his lip after I had wiped him.  He came up to the counter, grabbed a napkin, and wiped his mouth!  I was amazed!  I had no idea he had that oral awareness. 
  • Eyes: When Jacob was first evaluated by the international Adoption Center they recommended we do a vision and hearing screening.  With everything going on in our lives, we moved forward with the hearing screening through our cleft lip and palate team but seeing no reason to schedule a vision exam, we decided not to do it.  A couple months ago I was looking at a book with Jacob.  It is filled with pictures of animals and I was asking him to point to certain ones.  I noticed that he never seemed to see the top of the page.  We also have noticed Jacob will occasionally lean in really close to see certain things, like when he was finger painting at our early intervention play group.  Now that I am attuned to this, I am finding I catch him doing this quite often.  Needless to say, we have an appointment with an opthamologist at Children's Hospital of Cincy in July.  
  • Ears: At our last ENT followup and again 1 month later at his 2 year appointment with our pediatrician, both doctors have said how good his tubes look.  We have seen no drainage since surgery and he has not given any indication that he is uncomfortable.  He now has no excuse in pretending that he "can't hear us" when we talk to him! :)  We will have a regular followup with the ENT so he can check his ears, see how the tubes are looking, and clean out any wax that has accumulated. 
  • Gross Motor: Jacob is steadily catching up in this area.  I am pretty sure by the time he turns 3, he will be age appropriate.  I am still seeing some challenges due to the lack of tummy time he has had thus far in life.  He lacks quite a bit of cervical extension.  I thought when he first came home that his poor extension was part of the reason he looks down so much when he walks but now I am wondering if it has to do with his eyesight.  He also does not have full hand opening on one side when he crawls and I know this is important in forearm movement and fine motor activities so we continue to crawl around the house like crazy people.  Mom and Dad are getting a good workout, too!  We have enrolled him, along with our bio son in a gross motor class called Tumblebees at a local kids gym.  Jacob is in a 2 year class and I might be the only parent that actually makes her child do the whole circuit of activities.  My poor child....it's tough having a P.T. for a Mom!  Jacob especially likes when they pull out the big parachute and they get to run under it.  Lots of fun!  He is not yet jumping but our little guy is close!  Hey, he's the "Year of the Rabbit"!
  • Head: Jacob's head is growing, but as of our last appointment at the pediatrician, he is still not on the growth chart.  Our doctor said he was not concerned as Jacob's head is growing and by looking at the way he interacts, he can tell he is intelligent.  He kindly assured us he believed Jacob would flourish under our care and that we need not worry about this. 
  • Speech: Jacob is beginning to show signs of expressive speech.  We are focusing on animal sounds and what I call, "Babbling with purpose."  We make sounds from vowels and consonants and try to replicate the things we are learning from our speech therapist.  She definitely has a better ear for it than I do but she has been excited about the things she has seen Jacob do.  He is signing like crazy and really communicates very effectively without any expressive words.  He can say "mama" but I am not quite convinced that he associates the word with me.  We continue to work with early intervention where we have a speech therapist coming into our home once every 10-14 days and we attend an early intervention play group once a week. 
  • Feeding:  Jacob is still on pureed foods but at this point, they can be pretty thick.  We had a feeding eval yesterday at Children's hospital.  I expected they would find all kinds of things we could work on and improve but, on the contrary, the speech therapist had glowing things to say.  She liked the variety of foods and textures we were giving him, his great communication and imitating skills, his good lateral tongue movement, as well as his excitement and interest in the process.  She did recommend we officially begin some outpatient speech to assist with some feeding techniques and to "begin" a relationship with a speech therapist.  How do you like that word......"begin."  I imagine this will be a very long relationship!   
  • Emotional:  Jacob is overall, doing well.  In separating, I am able to leave him with my parents without any problem.  I have had a lot more difficulty leaving him in environments like the church nursery and the kid care at the "Y" (so I can workout.)  The first time I left him in the hands of an unfamiliar place was at the end of March so I could attend an adoption support group. The group was awesome and we were apart only an hour and a half but the whole next day Jacob would not look me in the eyes or interact with me.  I spoke with our social worker and she confirmed we were definitely "in the thick of things" and this reaction was quite normal for institutionalized children.  It is nice to be in a place where Jacob does not want to let us out of his sight, but I long for the day when Jacob will be so securely attached that we can separate in a way that might bring sadness, but will also bring a surety that we will be together again soon and there would be no fear involved.  But, that's why we are here and doing the hard stuff....to work toward a secure, safe, trustworthy, and peaceful world for our son.
  • What's next?  We have lots of appointments in the next couple months.  Next week, we will be seeing Jacob's dentist.  He is a pediatric dentist but specializes in cleft children.  We will have an eye exam in July.  We will begin outpatient speech therapy (to be added to our early intervention speech that comes into our home every 1-2 weeks.)  We also have our 6 month follow up with the International Adoption Center.  Here, we will meet with a physician and an adoption therapist.  The cleft team will not see us again until Jacob turns 3.  Our surgeon told us to expect he will need the pharyngeal flap surgery (which will be our next one) between the age of 3 and 3 1/2.  Jacob does have one side of his scar that is retracting despite the twice daily cross friction work we are doing.  Should this continue to retract, we may be seeing them sooner.   
Many of you have wondered how I am doing.  I have a genetic condition that predisposes me to respiratory infections and I have had a very tough winter since we returned from China.  I'd say 75% of the winter I was on an antibiotic.  My pulmonologist thinks the added stress of the adoption and surgery, along with the rough winter we had in Cincinnati, is the reason I have struggled so much.  I can say that I am very thankful for medication, even though I despise having to rely on it.  It is a love hate relationship.  What I have disliked the most about feeling so cruddy all the time, is that I wanted to feel good during this time with Jacob.  I wanted to be at my best.  Nevertheless, I can thank the good Lord that even on the days when I was fatigued, had a temperature, body aches, and chest pain, I was still able to "function" as a Mom, maybe not at my best but I could still get most of the job done.

I have said it many times over the last 6 months and I will say it again....God has been my refuge.  He has been my rock, my sunrise, my bird songs in the morning my umbrella on a stormy day.  He never, never, never fails.  His mercies are new every morning. 

Even during the times when my fears take over.....
  • What if Jacob is made fun of in school?
  • What if he can never speak correctly?
  • What if his scar doesn't heal properly?
  • How will we handle his first racist remark?
  • How will he handle his birthparents?
  • What if he never feels like he has a secure identity?
  • How......?
The questions and fears can take over our lives and steal every bit of the feelings and celebrations that come with the glorious progress we are making in this time.  Despite my fears and despite my feelings of inadequacy, God is using us in Jacob's life.  Every goofy animal sound we make and every funny face we do to get him to exercise his mouth reminds me that this is where he is supposed to be, and we are exactly the ones who have been gifted to do it and help him get there.  Get where?  We don't know.  But this is his life, and we are on his team.  We have promised that we will do our best for him and stand by him when those challenges do come.  Go team Jacob! 
My "Yogurtstache"