Sunday, September 21, 2014

Play it as it lies.

A lot of people have asked how Bex has been recently, so we figured we would provide an update.  She has been doing great overall!  We have not had any doctor’s appointments over the past few weeks, so we have just been focusing on her physical therapy exercises. She has Physical Therapy every Friday and she is making strides with it. Of course, a lot of the responsibility falls on us to incorporate those exercises and strategies into our daily routines and play times.  

Before Bex was diagnosed with IS and she started Physical Therapy, Lindsey and I wanted her to achieve the developmental milestone of sitting up ASAP.  However, after the weeks piled on without her sitting up, so did our frustration.   Every day we would work with her and employ typical strategies to get her to sit up.  For example, we would put her in a boppy pillow or just hold her up in a sitting position on our legs, trying to get her to get used to it.  This often failed and led to Bex getting upset and frustrated.  We were told this is okay and babies can get mad, so keep on working hard to hit that goal.  Eyes on the prize, right?  Well, what if the prize keeps getting further out of our reach…then what?

Well, of course, we then went through IS and realized she was developmentally delayed.  During our last neurology appointment, the doctor recommended we read the book Kids Beyond Limits by Anat Baniel.  It focuses on how to get the most out of children who have developmental delays or suffer from conditions that affect the brain.  It is an amazing book and it really changed our perspective on how to reach Bex and work with her on things.  One of the chapters that spoke to us the most was the one on “Flexible Goals.”

This chapter focuses on how parents need to be able to adjust their children’s developmental goals.  It doesn’t recommend throwing away goals if you are struggling to achieve them, but making sure they are realistic.  One of the big keys to flexible goals is making sure your goals are in line with your child’s abilities right now.   She recommends parents stop judging their child’s success by standard milestones. Instead, she believes in tailoring exercises around your child’s current abilities instead of letting standard milestones dictate what you do with them each day. In the end, she believes this will be more successful for the child’s development overall.  

Today, after dealing with IS and losing basically 3 months of development (the time period of when we suspect the hypsarrethmia started combined with the duration of her ACTH treatment), we now have a better game plan for helping Bex achieve her milestones than we did back in the spring.  We are now practicing flexible goals with her. We also both realized that most of our frustration back in the spring was that the suggestions being given to us were unsuccessful because they were a) not in line with Bex’s current abilities and b) were too focused on the milestone of sitting up without focusing on the process of helping her to get there.  So for example, one reason she has trouble sitting up is because she doesn’t have enough strength in her arms yet to help push and support her in a sitting position. Instead of just throwing her in a sitting position and watching her struggle, we may lay her on her back and work on having her push her arms against my hands to help build up strength.  We also learned we needed to first focus on strengthening her neck muscles before we could expect her to support her trunk. That is one reason physical therapy is great because the physical therapist comes in with the clinical eye that Lindsey and I do not have to help us understand where Bex’s current abilities are. Building the strength up in her muscles may add extra time to hitting the ultimate goal of sitting up, but in the end it plays a critical role in her development overall.
These strategies have been working and we have noticed a lot of new things Bex has been doing over the past several weeks.  She is doing a better job of tucking her chin and keeping her neck in line with her body when we pull her up into a sitting position. She also has been doing a much better job of holding her head straight and forward with less and less support from us, showing that her neck and other muscles are getting stronger. She is able to play with toys while being supported by us in a sitting position for longer periods of time, which shows that she now has enough control over her neck muscles that she can reach for things while in the sitting position. All of these things may seem like small feats for an average child, especially one close to 11 months old.  However, for us they are signs that she is progressing and starting to figure things out. If we were still judging Bex's success by standard milestones, we would feel defeated because she is not sitting up independently yet. This is why Baniel emphasizes the importance of celebrating all the small steps and successes that must occur while working toward the ultimate goal. Changing our outlook on how we measure progress is important because it makes both us and Bex feel more successful!
I will circle back to the book and how Baniel made the comparison of a child’s development with the golf rule “Play it as it lies.”  For those of you not familiar with this rule, it means a player must hit their ball wherever it lands, no matter the spot or the obstacles around it.  She states in the book regarding this golf rule, “As it applies to Flexible Goals, it means connect with your child wherever she is right now.  Discover what your child is able to do at this moment, and seek ways to tug at the edges, thus helping your child’s brain find its own unique path of development.”

When it comes to Bex, we don’t get a club-length to move our ball to a better spot to improve our next shot.  Why that can be frustrating, it also means we learn how to improvise and tailor our swing (i.e., our Bex’s exercises).  The goal may no longer be to birdey the whole, but to save par.  In the end, the hard work will pay off.

Wednesday, September 3, 2014

"Due to Bex's History...."

We have had a temporary hiatus from blogging, since we have fortunately had a temporary hiatus from doctor's appointments. This morning we had a check-up with the pediatrician. As you remember from Bexley's 9-month check-up, she did not grow in length between 6 and 9 months of age. No one was quite able to answer if this was a side effect of ACTH or there was another underlying issue. Today's appointment was primarily for a height check, but Chris and I had a few other issues that we discussed with him. Below is a summary of the appointment:

Height: Chris and I were relieved to hear that Bex has grown an inch in the last month. I honestly would have been happy with a 1/4 of an inch of growth because that would have meant she was starting to grow again and her growth hadn't stopped.  I think we both feared what sort of worst case scenarios would have to be discussed if she went another month without growing; therefore, we were over-the-moon excited to hear she gained a full inch. We actually cheered when the nurses read off her measurements. I think they might have looked at us like we were crazy that we were so excited to hear she was measuring in at 28 inches, but we have learned to truly celebrate the smallest victories.

Breathing: Bex started breathing heavier when she was on ACTH. We were told that was a side effect of the medicine and that we should only be concerned if she did it in her sleep, which she doesn't. When I mentioned this again to the neurologist last month, he basically wanted to make sure she never turns blue around the mouth and brushed it off as lasting effects of ACTH or weak breathing muscles. Anyways, a month later, she still has the tendency to breath heavy. Bex's physical therapist has even asked me if it is normal for her to breathe heavy, so I knew this was not something that I was just imagining and we wanted to see what the pediatrician had to say. He said her lungs were crystal clear, there was no blockage in her nasal passages, and no heart murmur. Based on his assessment, this is nothing that requires further testing at this point. He also didn't really have any answers, so the good news is there are no red flags right now and hopefully, it is still the ACTH working its way out of her system. 

Spine Alignment: The neurologist had pointed out that Bex's spine appeared to have a slight curve, which was impacting the alignment of her body.  He didn't order any tests at the time, but said we should continue to monitor it. Of course, that planted a seed in our heads, so we asked the pediatrician if he had every noticed it before. He said he had not, but did a physical exam today to look at her spine.  When she turned her head to the left or straight, he said he could see a slight curve and due to Bex's history recommended a referral to a pediatric orthopedic doctor. That appointment will most likely involve spine x-rays to get a baseline of her spine development and then from there we will just wait and see if or how this might impact her development.

All in all, it was a good appointment.  We really weren't surprised that he made the referral for us to see an orthopedic doctor, since we both realize that anything that veers slightly off the course of normal development will result in additional follow-up and monitoring.  We both laughed that "due to Bex's history" and "wait and see how she develops" are becoming common themes in all doctor's appointments. We are also learning to accept that most appointments will leave us with more questions than answers. There are days it is hard living with so much unknown about her future, but we remind ourselves on a regular basis to not let that worry stop us from enjoying moments like this with her!

"Yes pool boy, one more circle around should do it."
Bex Sandwich!