Hmmm where to start...its been a long month!
Post Serial Casting is going well, Morgan has gained her strength back in her right leg and seems to be walking better and we do see improvement in her right leg toe walking.
Kindergarten, not going so well :( - it seems to be a new struggle daily and there has been a lot of tears, frustration and "feeling sick". She is struggling with math, writing and letter/number recognition and even things like the cafeteria noise which bothers her/gives her a headache. On the bright side, we love her teacher and the students all seem to be very kind. Hoping we can work through this and make some adjustments so she likes school again!
On Nov 29th we had the first of a series of appointments at Gillette's to look at longer term picture and options for her cerebral palsy. She had a Gait Analysis done in St Paul which I wasn't quite sure what to expect going into, but was pretty fascinating! They went through extensive PT examination and took videos of her walking. They applied a bunch of reflective balls/sensors and have cameras which track the movement of the reflectors and records when muscles are active and when they are at rest. The sensors glow which Morgan thought was really cool and she quickly became "robot Morgan" for the day, see picture. We watched the recording after and this is essentially the same equipment they use to make animated films and for recording athletes so was kind of neat to see. They also did plantar pressure testing by having her walk across on a mat which senses the pattern and distribution of pressure. The last thing they tried to do was Oxygen consumption test which required her to put on a mask and breath into it. The second Morgan saw that mask she freaked out and we never got this done :( - she is quite scarred and paranoid from past surgeries clearly!
This morning we had another 4 hours of appointments at Gillette's in Burnsville for Spasticity clinic. She met with another physical therapist first for about an hour again who did thorough assessment of gross motor. We then had a long appointment with several doctors who had reviewed her case together- Neurosurgeon, Orthopedic and Rehabilitation medicine doctors - we spoke for a long time about her medical history and went through exams. Morgan spent most of her time entertaining them with the play doctor set and doll they gave her which I think won them over very quickly! This poor doll had several band-aids, broken eyes and surgeries by the time we left!
All of this information gives them an idea of her baseline now and they weigh options for future treatment - continue doing botox injections & serial casting (which wear off and need to be repeated), looks at drugs that can be helpful for spasticity, or some children are candidates for a surgical procedure called Selective Dorsal Rhizotomy (SDR). They do feel she is a strong candidate for this procedure and believe she will get great benefit from it.
Information on this procedure can be found here: https://www.gillettechildrens.org/conditions-care/selective-dorsal-rhizotomy-sdr-surgery/what-is-rhizotomy-or-sdr-surgery, short explanation is that they go into the back of her spinal cord and cut sensory nerve rootlets that are contributing to the abnormal muscle activity.
This was a lot to take in and we discussed the pros/cons and risks of moving forward (and what her future looks like if we don't) with this and the surgery itself at length with Gillette's neurosurgeon. The recovery from this surgery is very intense. The surgery is 3-4 hours and requires a 4 to 6 week admitted hospital stay and daily therapy post discharge. She would essentially have to re-teach her body how to move again- to roll over, sit up, crawl, walk, etc. If spasticity isn't treated at all, it can lead to more complications down the road like short muscles and bone deformities.
The next step if we should decide to move forward is to schedule with Morgan's neurosurgeon (he has surgical rights and does this surgery at Gillette's with the rehab doctor)- she needs to have her shunts assessed and ensure they are working (a couple of ways to do this but typically also invasive from what I understand) as well as full body MRI. Her shunts drain her cerebral spinal fluid (CSF) so if for some reason the pressure wasn't working optimal on either shunt this could cause issues with CSF leakage through incision after this surgery (versus draining through the shunts).
Pat and I will sleep and pray on this, do our homework and speak to other families who have undergone SDR and make a decision at some point in the near future. Looking forward to some time off work and school and to celebrate the holidays with family!
My Journey with hydrocephalus and Cerebral Palsy
Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
