It's amazing how quickly you can become used to something, isn't it? In three days, it will be September, and it's hard to believe how much our life has changed since May 12.

Tomorrow marks the end of Week 2 of intensive therapy. Next week is the final week of intensive, and then we will continue on with therapies elsewhere. I am waiting for suggestions from the therapists at NAPA that have been working with Addison, but I have already put her on the waitlist for another intensive at NAPA in six weeks. They require six weeks in between each intensive session. She is handling the intensity of therapy well and continues to progress daily.

In all of her sessions, they put on Theratogs. TheraTogs are orthotic undergarment and strapping products that give individuals with sensorimotor impairment a highly effective modality for improving postural alignment, stability, movement skill, precision, joint stability, and prolonged muscle stretch. TheraTogs are an FDA-registered Class I medical device. https://theratogs.com/ She looks so stinking cute in them. I have an interest in "other worlds" meaning worlds that are different than mine. I'm always amazed when I enter one that another world is always operating while I operate in my own bubble. We're in another world right now, and I'm amazed at how it's as if we've always lived in this one and how quickly we've become familiar with the lingo and technology in this "special needs world". Theratogs, who knew?

She also uses AFO's for her therapy. She was using them in the hospital, and we continue to use them in her intensive. AFOs are Ankle-Foot Orthoses, which are medical braces designed to support and improve the function of the foot and ankle. They are used to treat various walking disorders and muscle weakness, helping with conditions like stroke, multiple sclerosis, and neurological disorders. AFOs help align joints, provide support, and can be made from plastic, carbon-fiber, or metals. They are customized to each individual and cost about $3k. That is one of the things we've purchased with the funds that have been donated, so for all who have donated - THANK YOU. 

From a PT standpoint, Addison works on standing, side to side steps and walking daily. Just in the last two days, they have been experimenting with a gait trainer as well, which is a specific type of walker. It gives Addison some more autonomy in being able to walk by herself, which is nice, but I honestly don't love it. Her walking is much less controlled and erratic, and I am more focused on getting her to walk well so that compensation patterns don't set in. We tried out some alternates to the AFO's that are commonly used in these settings, called MEMO's, but she is able to stand for a longer period of time - I believe her record is 7 seconds with the AFO's and is so much more secure with her AFO's vs her MEMO's, so for the time being we are sticking with AFO's in PT. When we were in the hospital, it was recommended that she wear them for hours at a time, but with how busy things have been, we haven't been diligent about that, and it's been nice to let her have some normalcy at home in between sessions and just play on the floor with Andrew. 

We bought a few new gymnastics mats for each room in our home, so she can sit on those and that way if she falls it's a cushioned fall. We have her surrounded by pillows as well. She's very comfortable sitting upright playing on her mats and reaching to all angles to reach for her toys and is actually consistently crawling, albeit slowly. There's been numerous times, when I will place her down in one spot and am surprised by how far she has moved across the room. The other day she crawled to our coffee table in our game room, went to a upright kneeling position and started playing with the keyboard I have placed on the table. I made a circle with my arms around her in case she needed support, but she didn't for the time she was playing on the keyboard. She frequently wants to stand and walk. Being home in her environment with her toys and with Andrew running around everywhere has been extremely motivating. Two evenings ago, we were at our neighbors house playing in the street with them just like we used to, and one of the boys was riding his scooter. I didn't hear the conversation, but she told Kyle she wanted to ride her scooter. I was relieved to hear that she expressed that. The last thing I want is for her to be afraid to scooter in the future. 

It's really strange. Before the accident, she fell off her scooter a couple of times when the wheel would run into a bump, and she would say "why did my scooter make me fall?", and I would explain to her what happened. I keep on expecting her to ask me why she can't physically do what she used to do. She is clearly aware of her limitations, because she will express the desire to do something when she wants to do it, but she hasn't asked why she can't walk anymore. I'm surprised we haven't had that question yet. Her main thing she consistently expresses is that some of the things she has to do in therapy are hard. There are many times in therapy where she will say mama, I need you. It's always when something is hard and when she is frustrated. It's hard to fully appreciate what all she is experiencing and it's a hard thing to navigate as a parent, especially given the circumstances. Finding the line of nurturer and mother who desperately just wants their child to get back to normal is challenging for me. The therapists do a great job of making it fun for her and keeping her attention with really cool toys. By the way, the Melissa and Doug brand food toys are phenomenal. I am not a pretend play person, but their food toys make me want to pretend play. They make them in a way that mimics how you would actually prepare that food item in real life, so it's a more tangible experience for the kids. They are so cool. Another aside, NAPA takes gently used toy donations, so if you're ever decluttering, consider them or perhaps another rehab gym nearby to donate your gently used toys. 

Back to therapy... For this specific intensive, they spent the first 3 days assessing Addison and trying out different techniques with her before deciding on treatment course for the three weeks. So the remainder of the intensive is essentially repeating exercises and getting a lot of reps in to regain that mind body connection. If something becomes easy, they have ways to make each exercise harder. 

In OT, her therapist puts on classical music for the whole session. There is a lot of studies connecting classical music to brain development. She then uses a sensory brush to dry brush Addison's arms, hands, legs and feet. "Many parents of children with autism have reported seeing decreases in sensory defensiveness and anxiety as a result of using this technique. Some of the benefits may include improved ability to transition between daily activities, improved attention span, a decreased fear or discomfort of being touched, enhanced coordination, and better self-regulation." https://nationalautismresources.com/the-wilbarger-protocol-brushing-therapy-for-sensory-integration/?srsltid=AfmBOop3t8NXVbl55c3g-qk8p8Vw8WriAXTKfG2FSNBIFOuGHukKezVT
After that she plays with blaze pods. They are these circular lights that you can program to different colors. Addison does three rounds of sitting upright on a mat with one pod placed to each side of her, one beneath her and one on an upright bolster in front of her. They go off at various times, and she has to hit them when each pod lights up with a specific color. It's a game in that, they want her to hit as many as she can before the timer goes off. This is working on the preciseness of her coordination. A lot of times when she tries to press something or touch something, she isn't always precise in hand or finger placement, so this is working on that. It's working on her having to scan her whole environment and look to all sides of her. It's working on reaching in all angles, and just an overall increase in speed of movement. It's really fun to watch her do this. She then plays the same game while laying on her belly on a cylindrical bolster with her hands underneath her in a push up type position, so same game different positioning. She is much quicker when she's in this position. She then plays it sitting upright on the cylindrical bolster with two to each side of her, so working on more of the balance aspect. They just increased the challenge of that specific exercise by having her hold a one pound ball while she hits them, and then lastly, this week she has started doing three rounds of kicking them with her feet. The feet are objectively much more challenging, and that is very apparent while watching her. The coordination is not as strong. After she plays with blaze pods, she stands in four circular rings, one at a time, and lifts them up over hear head, pretending they are food, and then throws them over the head of a play toy donkey. This is working on the skills needed to dress and undress. Finally, we end OT playing with the toy of her choice - almost always food related doing some sit to stands while playing with the toys. This week they incorporated some of the toys into another exercise on the cylindrical bolster. She has to lay on her belly on the bolster and walk her hands out four times, then roll backwards enough to rotate and sit up. They have her do that multiple times to each side. I really appreciate that this specific therapist laid out a course of action from the beginning and has stuck with it and vocalizes to me when changes are made. It's nice to know what to expect, and it's very helpful for Addison coming into a new environment and having that consistency each day with knowing what to expect. It makes the days where she is more tired or less motivated easier. 

The last session of our day is DNI - dynamic movement. DNI "is a comprehensive intervention that incorporates current research on neurorehabilitation, technologies, and methodologies. This therapeutic technique is used by physical (PT) and occupational therapists to treat children with gross motor impairments by improving and/or provoking a desired action with great emphasis on alignment, sensory integration, and function. The goal is to promote progress toward developmental milestones." I was eager to see this one in action, and it is really cool to watch, and I LOVE Addison's DNI therapist. She is so amazing at connecting with Addison. She prioritizes connection over results, and it makes my mama heart so happy to see. You can really see Addison trusts her and opens up accordingly. I don't even know if I can explain what they do in DNI, and its different for every kid. Sometimes she stands on a wooden circle that rests on top of a ball. The therapist will hold Addison's feet down while holding the wooden circle, and the objective is that Addison's whole body has to counterbalance, so all the muscles are working together. The therapist moves the wooden circular board to adjust for her ability or inability to balance. A good analogy would be if you have ever watched a man hold up a girl in a cheerleading stunt. She has to be able to stablize her body to stay still. If she doesn't, you would see the man walk around a lot to try to compensate for her inability to stablize. That's what they are practicing here. Yesterday there were three wooden boxes placed on top of an unstable piece of wood, and she had to over and into the next box while trying to balance on an unsteady piece of wood. Sometimes they work on activities that help her crawl. And I'm blanking on some of the other things we've done in DNI. I'll focus more on specifics so I can explain them better in my next update. 

Every morning at the end of our first session, we wait in our room for our next therapist, and another therapist comes into the room rolling a huge cheese wedge mat into our room. It makes a really loud noise when she flips it over and over, so we call her the thump lady, and it's become a little something to look forward to each morning - seeing the thump lady!

I count my blessings every day we go to therapy. We have lots of hope for Addison's recovery, but just from observation alone it seems like many other kids have less, and their parents are walking the same road we are. I see parents working on laptops while their kids are in therapy, one family traveled from CHILE to come to this intensive. I know many others have traveled to Austin as well just to try this place. I am so thankful NAPA is in our city and just a drive from our home. Speaking of the drive, it hasn't been nearly as bad as I anticipated. If I leave at 7, it only takes us 35 minutes to get there, and we are moving the whole time. The worst drive is after her 2:30 session, but the worst drive I've had was 49 minutes. I am so thankful. I haven't been tied to the normal flow of weekday traffic since early 2020, and I really expected worst case, but it has not been a stress point at all. The first day of the intensive, the place was buzzing with first day of school energy, but all I could think about was how high expectations must be for parents to be traveling from all over in hopes of progressing their child. Knowing that people travel from all over, I am so thankful we were able to get in the week after being discharged from the hospital. 

We have lots of upcoming checkups at the hospital. I should probably get to putting those on my calendar. They're filed in our discharge paperwork that I have not looked at since being home. :) BEAT IT HOSPITAL! 

Our first week home, we continued with the same volume of water through Addison's tube that we were doing in the hospital. We have slowly transitioned away from most flushes in her tube. Every once in a while she will request tube food or water through her tube. She told us this week, she doesn't like looking at her tube, so we're always careful to pull her shirt down when it rises up. She didn't seem sad, though it made me sad, she seemed matter of fact when saying it. Other times, she will say, she likes her tube, so I don't know what to make of that. We have our checkup with the G tube surgeon on Wednesday, and I plan to discuss getting it out at the 3 month mark. I don't remember what is required for removal, but I am almost positive it's not surgery, and I know for sure it's much easier to take out than it was to put in. There is an inflated baloon on the inside of her belly that holds the tube in place, so it may be as easy as deflating that, I'm just not sure what is done about the whole where the tube was. Stay tuned. 

We will do a follow up MRI and MRV at some point. I need to schedule them. Supposedly they wanted a follow up by the end of August, but that was not what was communicated to us, so our expectation is sometime in October, but again, I need to call them...

We have decided to get a nanny for the next couple of months. Our neighbors happen to be moving to Houston the week after Addison's intensive ends, and their nanny was looking for another opportunity, so we decided to take advantage of the fortuitous timing. Both kids were supposed to start at a Mother's Day Out program next week, but with our current circumstances and amount of therapy, we have decided this makes more sense for our family at this time. It is much easier to have two adults around with both kids right now. Addison, while progressing, still requires a lot of assistance to move, and Andrew is into literally everything and a tried and true boy and likes to climb on everything and eat everything, so logistically, the extra hands will be a relief while Kyle is working. 

After the intensive, we are scheduled to have OT twice a week at home and PT 3-4 times a week. We are scheduled for speech once a week, but I am feeling like that may not be necessary. We will do an initial evaluation with the next therapy place and see if they are in agreement and go from there. 

Please continue to pray for a full recovery. Specifically, pray that we can get this G tube out at the three month mark. Pray for a complete dissolution of her clots. Pray for no shunt complications - not that those are cause for concern, but the shunt will forever be something in the back of my mind. I have been told that with shunts it's not a matter of if, but when some complication or alteration will be necessary. Pray for Addison's mind and heart and her body's response to therapy. Pray for endurance both mentally and physically. Pray for me to hold the space that Addison needs during this time. And pray for the many other families that are walking difficult roads at NAPA. 

We continue to be well fed, thanks to all of you. To not have to think about what to eat or cook is a blessing any time, but especially now.