First Day with Ankle Foot Orthotics (AFO’s)

As we continue aggressively (yes, aggressively) removing oxygen from our lives, we are adding in some new equipment for Owen.  This morning, Kellen, Owen and I went to Gillette and had the final fitting for Owen’s Ankle Foot Orthotics (AFOs).  If you’re not familiar with this type of brace, I’ve taken a lot of pictures from different angles so you can see what they look like and have answered a few of the questions that I’ve received about why Owen will be using them.

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Back view, while being worn.

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Front view while being worn.

What is the purpose of AFOs?  AFO’s are used for people who have impaired ankle function.  In Owen’s case, the doctor is hoping that by giving him more ankle support he will better be able to control his body for walking.  To walk, you need to control your hips, knees and ankles at once.  She feels by cutting it down to only two of the three, Owen will start walking sooner.  Also, Owen is showing a tendency to come up on his toes, especially on his right side.  AFOs prevent walking on tip toes.

AFO with no shoes

AFO with no shoes

Does Owen have Cerebral Palsy (CP)?  Owen’s development team is reasonably confident that Owen will not have a CP diagnosis.  At this time, his muscle tone is “essentially normal” in all four extremities.  He has mild increased tone in both of his hamstrings and ankles.  Also, his feet are flat during standing, and as I mentioned above, he favors his tip toes at times.  His doctor feels that by getting his earliest walking in the correct position, through AFO use, there is a chance that his mild tone issues will improve, or at least, not get worse.  She keeps saying, “Owen is a moving target”, which means that she doesn’t feel his tone is fully determined yet.  She is confident that Owen could walk without AFO’s but we are choosing to be aggressive now, in hopes that he may not need AFO;s for life.  From a development and neurological standpoint standpoint, Owen has been diagnosed with PVL, Muscle Weakness, Global Developmental Delay and Impairment.

What is the Process for Getting AFO’s?  In our experience, molds were created through briefly casting the foot, ankle and shins.  As shown here.

Owen getting molded for his AFOs (two weeks ago)

Owen getting molded for his AFOs (two weeks ago)

I was able to pick a fun fish print from a book of many options.  I thought it would be good for summer (assuming it ever gets warm here).  Over the last two weeks, the molds were used to make custom fit, plastic braces for Owen.  Today we went back and the braces were tried on and the final cuts were made and the straps were added.  In all, the appointment was an hour and forty-five minutes because it took about one hour between trying on the braces and making the final adjustments.

Completed AFOs.  Do you love his fish print?

Completed AFOs. Do you love his fish print?

What are Owen’s first Impressions of his AFO’s?  Owen has been doing really well so far.  Within 5-6 steps of hand held walking he had adjusted to the braces and walked comfortably.  When we got home, he crawled and cruised with no complaints.  We will work him up to wearing the braces for longer periods of time, but for now, we are starting at 1-2 hours a day while he’s playing.  The goal is for him to wear the AFO’s during most of his periods when he’s standing, cruising or working on walking.  He will not wear them for sleeping or rest.  We do need to get to the store to buy some more socks that will go higher than the brace.  Amy, mom to the adorable Ailyn Rose has recommended Target store brand socks that are $1.50 each.  That’s a much better deal than the $15-20 AFO specific socks on the market.  Old Navy Triple Roll Socks are another favorite for Amy and Ailyn.

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Owen’s AFO’s are hinged, which means his ankles can flex up, but not side to side. His PT has said, non-hinged AFOs are similar to walking in ski boots, so I’m glad he has the hinges.

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The shin strap is for stabilizing the AFO so it doesn’t move around while he walks. The lower strap is the more functional strap in terms of supporting the ankle.

20130409-121745.jpgBeing only a few hours in, I’m far from an AFO expert, so, PT’s and other’s with AFO experience, please add any thoughts or wearing advice that you have.  As we prepared family for Owen’s braces, I struggled to find a page that talked about AFOs in lay terms or showed pictures from a lot of angles, so I wanted to make that available on ANRC, but I know there are readers with much more advice than I have, so please share!  AFO’s are relatively common in the preemie world and we preemie parents are vultures for information.

More than just scars?

I mentioned yesterday that there is discussion about another possible diagnosis for Owen tied to his respiatory health.  In one way, that’s a little daunting.  He already is dealing with Severe Bronchopulmonary dysplasia, Tracheomalacia and presumed Asthma (they don’t tend to give an official asthma diagnosis without testing that requires the child to be older).  At the same time, I’m a little fascinated by the discussions because it shows what a complex, interrelated system the entire human body is.    Also, it potentially gives some answer as to why Owen is STILL on oxygen.

The theory has a lot to do with this picture (it’s not easy to look at so, I’ll give you the opportunity to scroll a little)

 

 

 

 

 

 

and this

Between major operations, drainage tubes and an Ileostomy, I can count at least 8 scars on Owen’s abdomen.  The biggest scar that goes horizontally through his midsection has been opened three times.  It was also intersected with the vertical scar going down the center of his abdomen.   This thick scar tissue makes the muscles around it very difficult for Owen to move, and we suspect, tight and uncomfortable for him to try to use.

It was in physical therapy (PT) where the extent of his scarring impacting his mobility became most clear.  It’s not very often that children can pull to standing first, crawl second and still not sit very well.  Owen’s PT at Gillette also pointed out that as soon as he gets into sitting, his respiratory rate (number of breaths per minute) increases significantly.  She then started talking about how we need to help Owen breathe better to help him with his mobility.

As soon as she said the word breathe, I said let’s start including his Pulmonolgist in these discussions.  Last week when I called Pulmonary to discuss Owen’s weight loss, I also explained that she was going to start receiving reports from PT and why.  I could hear a little excitement in her voice – she feels PT is onto something.  She then gave it a name; Restrictive Lung Disease.

I’ve only had one phone conversation on Restrictive Lung Disease, so please click the link to learn more, but it’s a pretty easy concept.  The diagnosis refers to, for any reason, the lungs not being able to expand to their full capacity.  As a result, these people tend to breathe shorter and shallower in efforts to keep up with oxygenating the blood. It’s always been known that his scars impacted his muscles and the efficiency of his breathing, but the new concept is that it’s also restricting his ability to take a full breath.

This all makes me wonder – could it be that Owen’s lung tissue is healthy enough for him to no longer need oxygen, and his restricted ability to utilize his lungs is actually why he’s still requiring cannulas?  Nobody knows for sure, but it’s a theory that’s being considered

So, what does this all mean for Owen?

  • The first step is Owen will start seeing a speech therapist to solely focus on breathing.  Breathing is the foundation of talking, so they can help with techniques that might make breathing easier for Owen.  There will also likely be some joint sessions with Speech and PT, since the skills are so connected.
  • I’m also getting trained on some massage techniques that may help loosen Owen’s scars to improve his mobility of the muscles in that area.  This process is like watching grass grow in the desert, but it’s an easy thing to do.
  • When we see Owen’s Pulmonologist next month, we will discuss further if/when Owen will have an official diagnosis and how it might change expectations and treatments.  In the meantime,  Pulmonary is going to bring Owen’s surgeon into the discussion to find out if it would ever make sense to go back in and clean up the scar tissue to give Owen more mobility (I tried not to freak out when I wrote that – didn’t really work).

I’m really excited that we have a team that is being so proactive about Owen’s total health.  It’d be easy for PT to just work around the scars – he is meeting his milestones, but instead, she’s been bringing in experts on scars, speech and will be working with Pulmonary, and potentially surgery.  There have been a couple of occasions that Katie, Owen’s PT at Gillette Children’s Specialty Healthcare, has called me in the evening to brainstorm around his scars.  I don’t know what the end result will be, but I think we are going to get some answers that will help Owen reach his highest potential.

On a week about giving thanks…Owen’s total team is about 100 people to put on the list.