Stretches were good! She modified one of the stretches slightly, while sitting she wants him to stretch to the left and right foot.
She was happy with his legs while on his tummy. Before they have been straight and tight. Today they were bent and well under him, improvement! He only reached for the butterfly toy, not the piano or the alphabet ball (the ones she wants him reaching for, the butterfly is just a pacifier). His protection reflex was better too.
He did cry through 95% of the session though... Better than the 98% of last time!
When 80 was still in the NICU, I did a lot of research on chronological development. I found Pathways.org through their youtube channel. They have a whole host of developmental videos but for the interest of this subject I'm referring to this one
It compares Marty, a typical 4 month old (there are also 2 month and 6 month with the same 2 babies) and Owen an atypical (developmentally delayed) child, doing the same exercises. I used this video as a basis for this video of 80 who was 5 months adjusted at the time.
If you sat through both videos then congratulations! The first one is long, and the second one is boring! Anyway, you can see that even at 5 months 80 is not quite up to par with a normal 4 month old. The good news is that he is not totally deficient in any areas, he is at worst (in my motherly opinion) 50%. He is now enrolled in physical therapy and we are working with him, double time!
At the beginning of the month, I ran/walked the Savannah Komen race for the cure 5k. It felt good and I was glad I did, though I dropped my phone, shattering the screen, and there was no race clock so I don't know what my time was. The two other ladies in this picture are from Stroller Strong Moms, they're two of the strongest athletes in the classes so they probably could have run a 10k in the time it took me to run my 5k but whatever :)
80 turned 3 months adjusted! I celebrated by making this board, and taking this picture!
My mom and I had planned a trip to visit my Granny again in Alabama on the 17th. I was supposed to pick my mom up at the airport in Jacksonville FL, then we'd drive on to AL. I was feeding 80 in the car in the airport cell lot when I looked down and noticed that his hair was wet. I looked and the same place he had the white spot back in February was open and leaking. I called the neurosurgeon, picked my mom up from the airport, and we drove right back to Savannah. We took him to the neurosurgeons office, then were admitted to Memorial PICU. He had the shunt removed, a PICC line placed in his chest, and started a round of antibiotics the next day.
Because he has hydrocephalus, they couldn't just take the shunt out, they had to put a temporary drain in place. You can see it here as the yellow tube stitched to his scalp.
It reaches down into the ventricle and when the pressure builds it empties via gravity and pressure into a measurement beaker. They measure how much is emptied over an hour, or several hours, keep track of it. If he doesn't put out very much, they will reconsider replacing the shunt.
80 backslid on his development. He stopped cooing, and developed a torticollis. He has always appeared to have crossed eyes, but in the hospital he developed a very evident Strabismus.
It was determined that he should not see an ophthalmologist until his torticollis had been resolved. He saw a in hospital physical therapist instead. She gave us a laundry list of stretches for his arms, neck, and back, with a few leg and trunk stretches thrown in for good measure.
I mentioned before that 80 backslid a bit developmentally, well that is not entirely true. He did learn a new trick, he found his hands for the first time! It was nice to see him doing something new during his time at the hospital. He was all smiles and lovey the whole time he was there, but it is depressing for me!
The most important development during 80s 3 week hospital stay was that his temporary tubing slid up and out of the ventricle it was supposed to be draining, and into the plural space. It started draining the wrong fluids, and caused a minor hemorrhage. The short story is that Dr Thompson decided he wasn't comfortable replacing the shunt. The temporary tubing was removed, his head plugged, and everything stitched up. A week or so days later he was out of the hospital, getting CT and MRI scans to monitor the progression of his hydrocephalus.. of which there has been none! Again, I'm writing this in June and he still has no shunt. It's amazing! He was discharged on the 4th of May.
Back to me: My mother was in town for all of this, so I took the opportunity to have her go to the hospital in the mornings while I went to SSM to work out. One of the days, while running the trail, I turned my ankle. I thought I had broken it initially, I could put no weight on it and my toes were numb, but it seemed to feel better very quickly and I was able to put weight on it and finish the workout. I have turned my ankle like this before and it had never been an issue so I, thinking I was still 20 years old, thought that I was fine. I had forgotten that I was almost 30 and can't just walk alway anymore. The next day, when I took my shoes off after coming home from the hospital, I was greeted with my very own cankle!
Even now in June it's still very sensitive, but I have finally been able to work out without a brace so it is getting better.
The final chapter of the whirlwind of April was that we had all the carpet pulled out of the living/parlor/hallway/closets, and the linoleum pulled out from the entryway/dining/kitchen. Replaced it all with wood-look tiles. This was supposed to be a huge thing that I was so excited about, and now it's barely an afterthought! Sheesh.
before (well before, you can see we still had Sumo and the parlor was still unpainted)
80 started physical therapy June 13th. The pediatrician referred him because he is a little developmentally delayed but more importantly because he felt like the gross motor development of his arms was outstripping his legs. His PT is Heather and she is very nice and calm with 80.
Sessions start with stretching, moves onto a few reaching exercises, and then core strength. Why core if the focus should be on his legs? Well babies develop from the inside out, which is why tummy time is so important. If he doesn't have a solid core he can't develop strong arms and legs. Actually the same is true for athletes, come to think of it.
He goes to therapy twice a week, so has only been three times. I feel like he's already improving. He's already able to briefly sit up unaided, though he still has no protective reflex when he crumples over. He is reaching with the left hand as well as the right, and reaching more often.
His current routine: Stretching
Reaching with opposite hand/foot, stretching up/down, then touching hand to foot in the midline. He brings up both feet when we bring the active foot to midline, the goal is to get him to disassociate the left from right foot. For now I put him on my stomach and tuck his inactive foot in my bra to keep it from moving.
Sitting and leaning forward to put the hands on the ground by the feet. He really hates this one. It's a guaranteed cry. Every. Time.
Twisting right knee over the left side, and left knee over the right.
Some foot stretches where she pushes on the balls of his feet to lenghten his achilles.
Exercises
Sitting, reaching forward to play with a toy, using both hands to play with the toy.
Sitting on an exercise ball, bouncing up and down, the therapist bounces him to the right, to the left, backwards and forwards. It builds his stabilizers and develops the protective reflex to bring his arm down when he leans too far to the right or left.
Laying on his stomach - reaching forward for toys. Working on him bringing his arms forward to push up and eventually facilitate crawling.
Laying on the boppy pillow, arms forward resting on the ground. Reaching for toys and putting weight on the arms to keep his head from falling to the ground. The last time we did this he just put his head on the ground as if to give up, lol. Tired boy.
Suspended midair "airplane mode" rotate left to right, backward and forward
Heather uses the Leapfrog Discovery ball for reaching at PT. I looked online but this particular toy is discontinued. The best replacement I could find was the Vtech Move & Crawl toy. It works just as well, if not better! He doesn't want to cooperate at PT, mostly I think because he is still getting used to it. Thursday he made it exactly 2 minutes before he started crying. He has cried through the entire 30 minute session all 3 times. So, while he does the exercises and stretches, he doesn't exactly enjoy them. I wanted to get similar toys to work with at home so he won't develop a bad association with the exercises. We shall see on Tuesday if my 12 dollars were well spent.
