Max Andrew Kroeker

Born: April 14, 2007

Max at 4 weeks Miles and Max (8 weeks) Max tries rice cereal at 5.5 months

Update: May 3, 2008

Hi, everyone,
Max turned 1 on April 14th, and we had a small birthday at home for him. He has had a pretty healthy year and is growing very well. Both Max and his older brother Miles (3.5 yrs) had pneumonia in March and Max was hospitalized for about 5 days. Max has some new tricks that keep us all smiling. He has been doing “yoga” all over the floor for months, (e.g. downward dog) and moving about in circles and backwards. You’d never know that he was traveling to a particular spot in the living room if you didn’t have to remove him from underneath the piano about 10 times a day. It’s wild how he can maneuver himself over there so subtly. He loves to be on hands and feet and to look at the world upside down from that position.
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He has a cortical visual impairment that seems to be improving as he matures. He appeared to see best peripherally for a long time and recently we get many more direct, long gazes often followed by smiles. He didn’t smile for nearly 8 months so I treasure each one. Now, he also laughs a lot, especially at his brother’s voice, face, and touch. We can have little tickle sessions on the bed – he recognizes the room and anticipates the tickles. His chuckles are priceless. This new level of interaction and responsiveness is very exciting for us.
He is also reaching out for our faces and clothing and can hold a spoon to chew on. He will reach out for toys, pull them to his mouth, and explore them.
We’ve tried to get him to hold himself up against the couch (he’s nearly 33 inches tall and 26 lbs), but until last week, he couldn’t maintain it. He is so thrilled when he is upright! He has a very unique way of getting himself upright – he finds a flat surface (ex, the side of his crib – which we’ve lowered since these first photos-, the couch) and then straightens his legs from a squatting position and slides up a wall. He then squeals with joy (“hey-heh-heh!!!) and slides back down. Then, up again.

Overall, we still work with Max’s feet by putting his foot braces on him at night. We also add thickener to his milk and he eats mostly stage 2 purees. We’re beginning to try a sippy cup and some mashed foods.

Max doesn’t babble but he’s very vocal – he had an “m” for a little while, but lost in while in the hospital. We have Early Intervention for PT, OT, and “pre-school/cognitive”.

As for us as a family, after one year we are beginning to catch our breaths. Our older son is very affectionate with his brother and we are starting to talk about Max’s differences to him. My husband and I have had our ups and downs as individuals and as a couple, but we are improving. My in-laws just moved to Hawaii for a 2 year stay . Besides the obvious comfort their presence brings, we know they will be helpful in terms of respite for me, extra attention for Miles, couple time for Scott and me. In the past two weeks we’ve had follow up visits with our geneticist, orthopedist, developmental pediatrician, ENT, ophthalmologist, and a new neurologist. Everyone is pleased with Max’s steady progress and health.

At one appointment when Max’s length was being measured by drawing lines at his feet and head on the paper on the examining table, Max cracked suddenly up at the sound of the pen drawing a line above his head. All of us in the room burst out laughing after Max’s (Ha-HA!) and then he started laughing back at us. I still smile every time I think of that.
Thanks for reading about Max and celebrating his progress with us. I am grateful to be part of this community.

Julie
 

Update: December 30, 2007

Max has been making great progress on his gross motor skills! He can now sit up for a couple of minutes and catch himself often before falling over. He is able to rock on hands and knees and to scoot backwards across the floor and recently can lift one hand while on his hands and knees.

Since early December Max has “figured out” how to eat and keeps most of the food in his mouth rather than all over his face! His first success was with poi (pounded Hawaiian taro) and he is now very enthusiastic about carrots and sweet potatoes. Santa brought lots for his Christmas stocking! Darlene, our occupational therapist (OT) was very helpful in teaching us techniques to help Max eat; we enjoyed watching him experiment with different tastes and textures. Max has been so successful that the OT will be cutting back on her visits in the new year. We still receive visits from the cognitive therapist and the physical therapist as well as our care coordinator, a Hawaii public health nurse. They are all wonderful with him and us. We call them Max’s fan club and welcome their cheerful and encouraging visits.

Max has been reaching out a bit more, swinging his arms a bit, patting his head and reaching for some hanging toys in his crib. He especially enjoys toys that make noise or have bright lights when he touches them. At 8.5 months our big boy is now about 23 pounds and 30 inches long. He’s wearing 12-18 month clothes and has soft wispy strawberry-blonde hair that sticks straight up. He now has four teeth—two upper and two lower -- and he still chews his thumb or fingers constantly.

Max doesn’t babble but he coos and smiles a lot when he is happy, which is most of the time. He will crack up at unusual noises, funny voices and especially while Miles sings to him in the car.

Max still startles easily and visually tracks objects inconsistently, but he does seem to take an interest in his environment and is enjoying windows, mirrors, and high contrasting patterns. We do not yet have an official diagnosis of a Cortical Visual Impairment (CVI), but we consider Max’s startling to have a possible visual component.

He’s a snuggler and loves to be held and walked around, though his increasing weight and size make it difficult to do for too long. Recently he’s enjoyed taking naps next to Mom – what a treat. Those naps are nice and long compared to his usual short catnaps. Over Christmas Max and his cousin Emma enjoyed lots of snuggle time together. He still sleeps all night long, though recently we hear him cooing in the early morning and find him on hands and knees in the crib enjoying his new mobility. He’s thrilled –and so are we!


Julie

10-3-07 Brief Update:
Max is thriving! He is almost 6 months old and weighs over 20 pounds and is 28 inches long. He is in the 95+ percentile for his height and weight and about 75 percentile for head size. His gross motor skills are his strengths, and he is now able to roll himself across the living room floor!

He is great on his tummy and can lift his head high and recently stared lifting his bottom and resting on his knees. He's been rolling over from back to front since 3 months. He is not yet able to sit up on his own, but is nearly there. His club feet have been corrected and he wears a brace about 15 hours per day to maintain the correction--we take off the brace while he plays on the floor. He has some low tone in his trunk and mild high tone in his arms and legs. We have started some physical and cognitive therapy through Early Intervention.
Max doesn't sustain a gaze and doesn't smile often, but we usually get a couple of big grins each day. He tracks objects with a 1-2 second delay. He has a coloboma in his right eye but his vision isn't impaired by it since it is superficial. He is slightly nearsighted and has mild exotropia in his right eye.

At four months he was evaluated at around the 1-2 month stage cognitively. These early tests have a strong visual component so we recognize they may not measure Max's abilities accurately, given his visual challenges. One vision specialist through Early Intervention suggested he may have a Cortical Visual Impairment (CVI), sometimes referred to as a cerebral visual impairment.
Max generally sounds congested. The Ear Nose and Throat doctor thought his hoarse cry was due to reflux but the barium swallow test showed that he was aspirating his formula into his lungs. He now drinks his formula with a thickening agent. He coos and gurgles and sometimes sings to himself when he is tired. He doesn't babble much.

Max is just starting to get his lower teeth and is drooling a lot. His fists or his left thumb are frequently in his mouth.

He has some minor physical anomalies -- his right eye is smaller than his left, he has a coloboma, is tongue tied, and his left ear has an extra fold. He has some blotchy birthmarks on his eyelids, forehead, across his scalp and some brighter markings at the base of his neck. He was born with club feet and an undescended testicle but both are now resolved.

Max "startles" frequently and his EEG was inconclusive as to whether these are seizures or not. Our neurologist suggests we try seizure meds to see if the startles decrease, but we've decided to hold off and give him some time and document them better. Max's MRI was normal, though his brain is relatively small.

We are grateful that Max is so healthy and growing so well. He is making slow and steady progress toward fine motor skills milestones and we are thrilled to see his great grins more and more.

Max's favorite toy is his older brother Miles, just turned 3, who is loud and bright and fun to track as he leaps across the room! Max also loves to hear Mom whistle and Dad cluck like a chicken -- it was his first laugh.

Julie and Scott Kroeker
jwkroeker@earthlink.net

Max's arrival:
Max was born at 38 weeks weighing 7 lbs 14 oz and 20.75 inches long. He was apparently healthy with high apgars of 8 and 9. He was born with bilateral clubfeet as our most recent ultrasound suggested. We were thrilled to avoid a repeat c-section with this birth of our second son and we held and snuggled with Max for about 2 hours before he was taken to the nursery for his bath, etc. We were moved to the post-partum room when we were told he was having trouble breathing, then things progressively got worse and the doctors recommended he be transported to a nearby hospital since he needed the specialized care of the NICU.

He was initially diagnosed with a lung infection but later that was changed to PPHN, Persistent Pulmonary Hypertension in Newborns. He was on the ventilator for 12 days and later transferred to the intermediate care, where he stayed for about three more weeks due to two consecutive infections. Max came home at nearly five weeks, on May 17, 2007. He chromosome tests came back on May 30th and we then learned that Max has extra genetic material on the tip of his second chromosome. After we were tested, we learned that I (mom) have a de novo balanced translocation and Max has an unbalanced translocation. He inherited a second chromosome that is missing a small piece (p25 to the end) and in its place has an extra bit of a 13th chromosome (q22 to the end).

Max's first casts for club feet were applied on May 9th, and they were changed weekly until June 26th when he had tendon release surgery. He then wore casts for about a month, and now wears a brace.