A.K.A. The last day at intensive rehab.

Last day of intensive therapy today! What a ride we’ve come on. I started writing out the occasional baselines when we first arrived in order to track progress that wasn’t always as obvious to us. I hoped it would help me stay positive about Jack’s recovery even if it didn’t always seem to be as fast as I wanted it to be. I hoped it would help keep me patient in those early days when I was missing my son and longing for the day in his recovery where he seemed happy, could play and when I could hopefully see his little personality once more. So today I’ll wrap it up with one last baseline. But first, looking back:

April 19th Baseline (Day 24)

(we’d been at Kreischa for 6 days, but hadn’t really started his therapy plan until April 16th)

• Matt & I often reference “newborn Jack”
• can sometimes hold head up for a few seconds
• plants feet and kind of worms himself backwards when he’s on his back
• hands mostly at sides; although today for the first time brought them together and touched his face and mouth
• right hand normally up near head 
• his eyes track well although he doesn’t turn his head to continue tracking
• but has started to turn his head more
• seemed to pay attention to an entire book today
• no soother or food yet; seemed to almost suck on my arm and his hand today but was more of a thrusting of the tongue; though tolerated me cleaning his tongue well 
• no verbalizing but sometimes when he is crying makes a “mama-like” sound
• actually sat on my lap for 4-5 minutes and watched TV (at this point he was still super restless when he was awake and unless we were moving in the stroller with him he was pretty frustrated, whiny, wriggly or straight up crying)
• seems to like being held more & more

May 20th Baseline

(the most recent baseline I wrote out. we’d been at Kreischa for 5 weeks)

• can hold head up most of the day but may get wobbly when tired or rest his head
• still reaches better with left hand and stronger with right
• still kind of slow to reach and grasp something but getting faster and more accurate
• can now grab millet cracker and bring to his mouth with pretty decent accuracy
• likes the pick-up/drop/put back game; can grab plastic food, marbles in OT, needs to work on fine motor and pincer grasp
• doesn’t drop things as often unless he’s wanting to, they’re heavy or awkward to hold
• has started to bring second hand to hold a toy although not very often, especially without encouragement
• rolling both sides and ways now but still mostly to the left; arm doesn’t get stuck very often anymore
• no more NG tube!! drinking getting better but no more than 60mL at a time; sippy cup or pouring cup work best as does apple juice in his water
• solids: scrambled egg, banana, melting crackers
• babbling also including “dadas” and “nom noms” while eating; will imitate fish face and stick tongue out
• has some new goofy smiles and laughs
• has pulled socks off in the carseat
• tracking has improved… looking more in front of himself now and at the toy he’s grabbing
• still falls forward in sitting position but understands when you ask him to sit back in his high chair or therapy chair
• in tummy time only brings up his right leg unless you push his left leg up
• has only tried to tuck his legs up twice to try to get something he really wants in front of him

June 14th Baseline:

• holding head up is a non-issue now. Before he would tilt it towards his right side a little but even that has improved
• Jack’s figured out his right hand is stronger so now that has definitely become his dominant hand. we have to actively work to remind him to use his left
• his grasp and most movements in general have increased in speed. he’s drumming now with his right hand (aka banging his hand on the high chair tray and it’s definitely faster than a week ago) Jack was always a “drummer” so seeing this action from him makes me happy and especially when he does it in response to music playing
• grasp is stronger and uses the inward flexion of his right hand more and more; left hand still using outward flexion but it is getting better as well; grasp is getting stronger but left hand needs work
• can pick up beans and drop them into containers
• still doesn’t use two hands to hold a toy without encouragement unless he’s in tummy time
• drinking has improved a ton: meeting or surpassing his water goal (360ml) most days although we’re still bribing him with a dash of apple juice in there
• solids: he’s done with baby food! we’re now feeding him all of the above, plus soft noodles, tiny pieces of fruit, veggies and meat, yogurt, bread etc. it still needs to be soft and small if it can’t be mashed as he’s not chewing all the time
• wants to feed himself with the spoon sometimes but needs assistance; still needs assistance with finger food as well to make sure food gets into mouth instead of dropping first
• babbling lots. as in all. day. long. tries to say some words: please, cheese, banana, hi, hand. animal sounds: snake, elephant, horse. now whenever he sees a truck or car makes the motor sound.
• smiling and laughing lots. even dishes out a fake laugh. has the moms and nurses at Kreischa eating out of his hand. the flirt. 
• visual tracking is great. only every once in a while will blindly grab at something while watching you for example and I think that’s mostly when it’s on his left side
• can sit unsupported for up to 5 minutes sometimes (still needs pillows around him or someone behind him as he won’t really catch himself)
• can almost do the army crawl but can definitely pull and drag himself a good meter or so. tires easily and he “forgets” his left arm which will get stuck underneath him but if you remind him he pulls it out
• tucks up his legs way more often
• can support himself in the “four-point” (hands and knees crawling position) for a few seconds; doesn’t get as whiny when you try and put him into that position
• can hold himself up more in a kneeling position when you’re supporting him from behind and keeping his knees together (can also push up from that position using his legs)

Goals

• pincer grasp
• big focus needed on strengthening left hand and arm
• playing with both hands when upright; toys and games that require both hands
• chewing food more; continuing to increase side to side tongue movement
• being able to hold sippy cup himself
• crawling, four point position, pulling up on small steps
• upper body and core strength 
• tucking legs has improved in supine position but needs work in prone

A HUGE thank you goes out to the therapy and medical staff at the Kinderklinik in Kreischa. What a journey we’ve been on with you all. Vielen Dank von Jack der Räuber!