Something to Talk About

I was gently reminded yesterday that it has been almost a month since I've updated here and quite a bit changes for a toddler in a month.  It's true.  We certainly have plenty to talk about, yet we're feeling a bit speechless.

Gabe has picked up several new words in his growing vocabulary.  Although we may be the only ones that recognize a majority of his phrases he is beginning to use more phrases and is having fun exploring animal sounds.  As anyone who has spent time with him in January will tell you, "Woof!" is his best friend and his best word.

{sweet talking}

In the last few weeks we have been experimenting quite a bit with Gabe's diet in hopes of finding the right combinations for his digestive issues.  Just when we think we are on to the right balance of natural supplements we are tipped off to new research that suggests that maybe the right balance isn't right after all.  Thankfully Gabe has no complaints about eating. anything. ever.  and he cooperatively gobbles whatever is offered.

Last week we visited our ABM therapist a few times.  It is incredibly exciting to see the progress he is able to make in such a short amount of time when he is working with her specifically starting with the movements that he is already confident with.  I have embraced the idea of only working on movements he is already using independently.  I have defended the controversial, and somewhat experimental, stance on not using AFOs with our therapist and orthotists. We have had several conversations with our in home therapist where we do not see eye to eye on what Gabe should be practicing. I had quite a light bulb moment last week about Gabe's amazing progress and capability. When explaining my frustration to Rene about Gabe's IEP goal of standing for 25 minutes she asked me what our therapist would do about that goal if Gabe was walking by the next time she saw him.  It was just the reminder I needed {again} that despite Gabe's diagnosis I need to dream beyond the limits.

Oh... about that MRI!  Our last neuro appointment was in August and the MRI was in October.  There seems to be inadequate conversation between our doctor here and the doctor in Boston, and neither of them is willing to speak out independently other than to say "It looks ok."
Okay, no syrnx? Okay, how is the Chiari?  Okay, are the vents growing?  Okay, what is the next step?  We obviously still have a lot of questions.  Last week I decided to call for my own copies of the MRI films and radiology reports and Dr. and Dr. Gabe's Mommy & Daddy took our own peek at "OK."  From our untrained eyes we felt there were some good surprises and some expected bummers.  But, overall it will be okay:) We did call for a follow up with our neuro in GR and they were able to get us in for February to discuss our questions after seeing the films.

This week Gabe started a Parent and Child group session at the Conductive Learning Center.  It is a group program with one of his best buds.  We entered the two week session with the hopes of learning how to implement their proven techniques for bladder and bowel training for children with spinal injuries.  Although I  am glad to be learning the strategy, we are already seeing other benefits of participating in the class.  In the first three days I have really appreciated the chance to see Gabe: interact with another child his age, see empathize with each other as one or the other of them cries, mimic his peer, become increasingly more comfortable with his instructor, follow directions, stick up for the things he doesn't want to do, participate in small group fine motor activities, paint, play, experiment, serve his own snack, drink out of a big boy cup, copy movements with his mouth and belly, chase his "woof", shoot hoops, and be downright determined!  I have to admit I have never had as many reservations about trying something with Gabe as I did about this session, but I already feel  the effort to be there with him daily is worth it!  Speaking of needing constant reminders, this class is reminding me{again} on the many pieces of Gabe beyond the gross motor skills we spend so much time focusing on.

However, tonight we bought him a sturdy walk behind toy.

{sweet walking}

No words. Just tears, smiles, and thanks to Him who is able to do more than we ask for or dream of - infinitely.  To Him be the glory in Gabe's life forever.

Everyday Victories

Two weeks ago Gabe had his long anticipated MRI.  It was a lengthy study of his head and spine.  I thought the wait for scheduling was ridiculous? We are still waiting for results.  Trying not to be antsy, but I will admit to leaving another message with each neurosurgeon in hopes that someone will fill us in.  At the same time I like to believe that no news is good news, right? 

He's obviously not worried about it!  He has a contagious smile that he flashes often.  He also has a cheesy, teethy smile that he knows will always get a good laugh.  When he wakes up happy none of us can resist being the first to greet him.  Most often Gibson beats us to it and happily hops in the crib for some brotherly bouncing.

We are still amazed, and so thankful, for the way Gabe is getting up to standing.  We pull out the camera at least once a day to capture it on film, half wondering if this might be the last time we see it. Anytime someone else sees his trick for the first time they eye us suspiciously, "Are you sure he has SB?” My response "Pretty sure no one has told him yet!" 

One of his therapists believes it is time for Gabe to start wearing AFOs to help him strengthen his stance for side stepping and longer periods of standing.  His other therapist does not agree.  To some of his doctors surprise we refused the recommendation for wear when they were made at four months.  Also to their surprise, he has full range of motion in his ankles even without using the AFOs.  To their chagrin this momma is putting up a bit of a stink again. I understand that they might be necessary in time, but we don't think it's time quite yet.

One day, one smile, one miracle at a time.

Appointment Week

It was not easy to keep up this week.  Our house and my hobbies fell behind, but we did focus on health, therapy, and friends!  Really, that is all that matters anyway. 

Gabe recently had his first urodynamics study and kidney ultrasound, which will serve as baseline norms for him.  At this point both of those tests are showing appropriate results for an infant with Spina Bifida.
We were also glad to finally meet with the pediatric orthotist.  She was encouraging with her reactions and conversations regarding the strength and movement in Gabe's legs and feet.  Interestingly, she is the first to give a "defect level label" to Gabe's lesion based on his sensation.  The orthotist also spent a bit of time talking with us about therapy and things we will watch for in the future.  Although I have still been struggling with Gabe's AFOs she agreed with the prescription and encouraged us to use them during his nap times.  Basically, he will only wear them when he is not actively moving his ankles.  This will be less time than was originally recommended and I'm a little more okay with it.  A little. 

Our in home PT visited this week and felt like we were making good progress with the tightness in Gabe's upper body. 

Near the end of the week we had a visit from our Early On nurse who updated Gabe's IDA and found him to be meeting the expectations for his adjusted age.  More encouraging news.  We spent a bit of time talking about what services will look like for Gabe in the months and years to come.

Overall, the week brought many good answers and plenty more questions.

Baby Steps

Gabe has had his AFOs (ankle-foot orthoses) for about a month, however he wore them for the first time last night (hangs head sheepishly...).  Having these made is a bit like watching an artist work on a masterpiece.  The mess of the plaster, the cutting, the molding, the pushing, the cutting.  Then trying them on, adding more, cutting more, trying them on again.  It is quite an involved process, but we have complete confidence in the able hands who created these. I am certain they are the perfect fit for Gabe's chubby little legs. 

The purpose of this pair is to hold his ankle in a 20 degree flex in an attempt to keep the motion he currently has for pointing and flexing his toes.  I wasn't sure that I agreed completely with this prescription, nor was I overly excited to brace Gabe's feet which have good active motion.  However, we've agreed to try them for 6-8 hours each day while he is sleeping.   

Well, so far we've tried them for 30 mintues.  It's a start...right?!