Report from Glenrose Rehabilitation Hospital


Today I received the report from Noah’s first appointment at the Neonatal & Infant Follow-up Clinic at the Glenrose Rehabilitation Hospital in Edmonton. He was there on September 12th for a 3 hour appointment, and this is what they say:

____________________________

HISTORY:

Noah was born at term, birth weight 3920 grams. There was meconium at the time of delivery, Apgars were 2 and 7 with a cord PH of 6.9. He initially recovered, but began to have seizures on the second day of life and was transferred to the University Hospital [Stollery Children’s Hospital, which is connected to the University Hospital]. He had a very large cephalohematoma, and hence the head circumference measure on admission was 40 cm; this does not accurately reflect the true head circumference. Noah had severe hypoxic-ischemic encephalopathy, and on day 6 was extubated to comfort care. He was discharged home, and has been making nice progress. He is followed by Dr. Faltaous in Grande Prairie and every 3 months in Edmonton by Dr. McGonigle. An MRI that was done at 2 months of age showed cystic encephalomalacia with subdural collection also likely secondary to the encephalomalacia. He is due to see Dr. Lewis in November, and his parents report that his eyes “wobble”, although he does follow and track and recognize his parents visually. Of note, Noah’s father has very limited vision in his left eye, which is reportedly due to a developmental anomaly of the eye. He also wears glasses for shortsightedness. [For the record, I wear glasses for shortsightedness, he wears glasses for farsightedness].

Noah’s parents did take him for a course of intensive physiotherapy [ABM] (which is not covered by Alberta Health Care) and told us that this made quite a difference to the hypertonia of his upper limbs. They are also considering hyperbaric oxygen therapy which is now available in Edmonton. Noah also receives Home Care physiotherapy, occupational therapy, speech-language pathology and nursing in Grande Prairie. He has no difficulties feeding orally.

ASSESSMENT

Nursing/Pediatrics: Head circumference 44 cm (24th%ile). The fontanel is almost closed. General examination is unremarkable, testes are descended. He had some patches of red dry skin, and he had a diaper rash. Dr. McGonigle had prescribed cream for a Candida rash earlier today. Noah has markedly low tone in the trunk, and a marked head lag. He has no head control. The tone in his limbs is variable. He has dystonic movements of his upper limbs and head and neck, and as his head turns from side-to-side he spontaneously goes into an ATNR posture. The Moro reflex is also present but not brisk. Hips are stable. Intermittently there is loose fisting. He also has horizontal nystagmus, and an alternating esotropia. I could not see the fundi, although red reflexes were present.

Audiology: The assessment took place in a sound treated room and was completed by a registered audiologist. Visual reinforcement audiometry was utilized with insert earphones with good reliability and elicited responses consistent with essentially normal hearing bilaterally with responses between 15 and 20 dB for 500, 1000, and 4000 Hz bilaterally. A speech recognition threshold was obtained at 15 dB HL in both ears using insert earphones. Tympanometry indicated normal middle ear pressure and compliance bilaterally. Ipsilateral acoustic relex testing could not be completed. Otoacoustic emission (OAE) measurements were performed utilizing distortion product stimuli. OAEs were present bilaterally. Noah’s OAE responses are consistant with probable normal cochlear function bilaterally. Noah’s hearing will be reviewed in conjunction with his next visit to the Neonatal & Infant Follow-up Clinic due to his diagnosis of HIE III.

Dietary:

Weight = 8.33 kg (29th%tile, z-score -0.54)

Length = 70.8 cm (35th%ile, z-score -0.38)

Weight/length = 35th%ile, z-score -0.39

Head circ = 44 cm (24th%ile, z-score -0.72)

Measurements were plotted on the new WHO growth chart. Noah looks well nourished and plots appropriately for his weight-for-length ratio. His weight-for-length ratio is a little low indicating he is lean. All other measurements appear appropriate for age and development.

Physical Therapy: Noah was assessed by PT using clinical observations. His parents report that he is followed by PT and OT in Grande Prairie every two weeks. He has also had one week of intensive therapy using the Anat Baniel Method. His parents note improvements in his skills following this. In terms of equipment, Noah is reported to have a Tumbleform floor sitter and a reclinable high chair for use at home.

During the visit today, Noah presents as a very sweet little baby who shared some smiles during the visit. He has a nice calm disposition and tolerates handling well. Noah is noted to be quite a floppy baby with significant underlying hypotonia and fluctuating increased muscle tone in his extremities. Ranges of motion in both arms and legs are within normal. Noah shows limited awareness of his environment and visual tracking/focusing was found to be inconsistent.

In terms of his skills, Noah shows spontaneous anti-gravity movements in all four limbs when in supine (back). His movements varied between being slow and writhing (choreoathetoid) to quick and jerky followed by a slow release (spasms). His parents report he has not had any seizures since around the time of his birth. When toys are held up for Noah, he is not able to reach or bat at them purposefully. Noah does make attempts to bring his hands to his mouth and gets occasional success with this. At times he over-shoots and gets his hand to his cheek or his forearm near his mouth. His parents also report that he has rolled between his back and tummy at home but is not able to do either consistently. When placed on his tummy today, Noah showed good head elevation to 90 degrees. He is able to turn his head freely between left and right while propping on his forearms. He does fatigue easily and will lower his head for a rest. Active neck extension is observed as he raises his head back up. Noah was noted to tolerate roughly 4 minutes on his tummy while intermittently looking up. Skills in prone are a strength for Noah and parents attribute this to the intensive Anat Baniel therapy.

In supported sitting, Noah shows fluctuating head control. He requires support at his upper torso to stay upright and tends to adopt a rounded posture, rocking back onto his sacrum. A GRIP seat was trialed today with him to encourage more upright supported sitting. Noah tolerated it well. His parents would like to assess his positioning in his high chair at home before deciding on if the GRIP seat is necessary. Measurements were taken in case. A size small Rifton blue wave bath seat was also trialed. Noah tolerated and fit this well also. He does have a commercial bath tub at home but is reporting to be outgrowing this. His dad occasionally sits with him in the tub as an alternative. Noah’s family will discuss the equipment with their therapists and contact us if they are interested in either piece.

Lastly, Noah was held up to stand today. He was able to take his full weight through his legs but was not able to hold his head up consistently while standing. His parents report that he is using a jumper at home. This is not recommended since Noah does not have the adequate head control to support this. [For the record, I’m pretty sure they misunderstood what we said. He has a Jumperoo. We place pillows around it so he’s not banging his head around and he’s not even really jumping. For all intents and purposes it’s basically an Exersaucer. I’d understand if it was a Jolly Jumper, but no, it’s a Jumperoo.] He can be held up to stand or be placed on the floor or in a supported seat instead.

Overall, Noah’s gross motor functioning is significantly delayed for his age of 8 months 23 days. He is well supported in the community by PT, OT, and SLP.

Social Work: Noah is an 8 month old boy, who had a severe brain injury around the time of birth. Despite this he is following his own developmental pathway. He is a very happy child and has very nice interactions with his parents. His parents are realistic with respect to the expectations, and are committed to finding the best treatment and best outcome for him.

___________________________

That was essentially the full report. I like it because it is a very comprehensive list of updates for how Noah is doing, although to be honest I don’t like it simply because it is very hard to read all the things wrong with him, right there in black and white. In any case it’s a good thing to have for our records, and I definitely thought it was interesting and informative.

 

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3 thoughts on “Report from Glenrose Rehabilitation Hospital

  1. Just read it through as well. Some parts are very hard to read. I am so please you are heading back for more ABM therapy. It seemed to be remarkable what she could do. Quite a change as well from what they told you after he was born. Noah will continue to surprise his doctors and push his way forward.

  2. I agree it’s hard to read – I had to google a lot of the terms and it was hard to get my head around all the things he is dealing with – but it seems like he is doing a great job at overcoming a lot of these things!

  3. Hello,
    I heard your story on Global and decided to visit your website. I am working on my Master’s in special education at the University of Alberta and one of my research interests is augumentative communication for children with severe to profound disabilities (most of my interest lies with children with significant cognitive impairments who cannot process symbols). I am curious if there has been any talk about assistive technology for communication and control over his environment (e.g. switches) in Noah’s case. I saw his video on the news. He looks like a beautiful little boy with a lot of life in him. I could tell in the video he was very alert and trying to follow what was going on (e.g. track and interact), but his body, including his eyes were working against him. I think that having things that he could control with his physical limitations early on will be very important for his development. I read a blog of a family who rigged up a foot switch to their baby with physcial disabilities animated toy so the little girl was able to operate it herself. My thoughts and prayers are with your family.
    -Laura

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