Morgan and PBI Update

Morgan had a PBI (Perinatal Brain Injury Clinic) Clinic appointment on Wednesday.  This is a group of doctors that we are used to working with from our NICU days. The group consists of 2 doctors and a therapist.  It’s an appointment we attend every 6 months to help the team see the development she makes with her past brain injury and to monitor her progress. Our group consist of Dr. Chang is Morgan’s Neurologist, Dr. Morozova is her pediatric rehabilitative specialist and a PT (Physical Therapist) attends and sometime a Resident from Dr. Chang’s team.

This appointment went really well.  Since Morgan got her DMO (Dynamic Movement Orthotics) suit back in November, her posture has gotten extremely better.  She’s able to sit up by herself and crawl and has even tried some standing movements.  During our Healthcare for Children with Special Needs appointment in November, she also got her leg braces, knee immobilizers, crocodile (gait trainer) and night-time brace.  We ordered her DMO suit in this beautiful lavender (as seen below).

The DMO Suit was suggested by Dr. Morozova because Morgan was extremely tight muscle wise.  Her body wasn’t allowing her to move they way she should and so it was limiting.  A DMO Suit is designed to align the shoulders, torso and hips. It improves symmetry and assists stabilizing the body and spine. It gives a non-restrictive and highly effective level of support to maximize postural stability and also aids distal control and positively influences muscle tone and enhance function.  The suit has been such a godsend.  It’s uses are below:

EFFECTIVE FOR
  • Cerebral Palsy
  • Muscular Dystrophy
  • Retts Syndrome
  • Spina Bifida
  • Ehlers Danlos and other Hypermobility disorders
  • Spinal Muscular Atrophy
  • Chromosomal Disorders resulting in neurological difficulties such as Downs Syndrome
  • Non-specific developmental disorders
PROVIDES
  • Proximal control
  • Core stability
  • Biomechanical re-alignment
  • Improved posture
  • Dynamic balance
  • Improved muscle function
  • Improved muscle tone

Since getting them, we had been doing ok for the first few weeks. But eventually, her night brace, caused a serious blister, which enabled her from wearing it for about 3 weeks while it healed. So this was our first check up with our Dr’s to ensure that things were fitting well, ask some questions about when she should wear them, etc. (This is Morgan in her crocodile (gait trainer) below:

The updates:

Dr. Chang – She was very pleased with Morgan’s progress and how well she is doing. We discussed her MRI (which was great from last January), follow-up appointments with Morgan’s care team of Drs, discussed all her progress and the only issue she has been with how tight Morgan’s left leg is. She’s happy with her development but wants to focus more on colors, alphabets, numbers, speech, all the developmental things a 2/3 year old should be figuring out by now. So we will work harder on those things.

Dr. Morzova – She was very happy with her balance and sitting progress. The DMO suit is helping and is absolutely doing the job. We discuss it’s fit because I have concerns about Morgan’s growth and how small the suit looks now and how & when we will know if it’s too small. We will do some measurements at our personal appointment with her in late March. So possibly ordering a new suit eventually.

With her knee immobilizers, we are on a new schedule.
Right leg immobilizer during NAPS…
Left leg immobilizer only when the night foot brace is not being used (as she agreed that it’s too much to do both until Morgan is older maybe & tolerates more.) Alternating every other night.
Left Foot Night Brace – Every other night with a high sock.

She felt that the day braces are cut wrong and therefore was going to write a prescription to either have them reordered properly or cut to fit. She was very concerned about how tight the top part that fits over her foot felt even with the little white cushion insert. Way too tight and not at all going to help, if they are hurting her.  So we are kinda on hold with those unless, we want to pad her down (which may or may not work). But we will have something going on with them (fixed or new pair very soon)

She wants to continue stretching her ankle on the left as they all seemed very concerned about the tightness of the leg and ankle.

Prescriptions will be written for therapy with HSCSN too. So she can work with the crocodile more and then braces once they are fixed.

I was happy with this appointment and I’m extremely happy with my baby girls progress.

Peace, Love and Dynamic Movements,

L’Erin & Morgan

 

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