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.

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Tuesday, August 20, 2019

7!

Tomorrow Morgan turns 7!
As a "preemie mom" I am not sure if her birthday will ever get easier, it tends to bring back a flood of painful memories from the day she was born.  Facebook reminded me that just a few days before she was born I traveled home from Brazil and I am so thankful I was back home in the US but I think like most preemie moms we live with heavy guilt and question every activity and preventative measure I could have taken on the days leading up to her unexpected birth.  I remember not feeling very well the evening before (sort of an unexplainable yucky feeling, tired and had a back ache) and in hindsight I was probably having contractions and didn't know it.  I remember everything about the day like it was yesterday- calling the nurse line, rushing to labor & delivery, the expression on the doctor's face when my water broke and her saying "I am so sorry", the long ambulance ride to Mpls and I can still feel the discomfort of not being able to move without her heart rate dropping and my chapped lips from the oxygen mask. There were a lot of nurses, doctors and drugs, but I can clearly picture the scrubs being thrown at my husband and the rush to my emergency C section and I remember the slight sense of relief I felt when the neonatologist said something like "look at me, look at nurses calmly working on your daughter through the glass window, she is alive and breathing and we are going to take great care of her".  This was the beginning Morgan's long and challenging journey but a miraculous one that we thank God for every day!
On a lighter note, Morgan is PUMPED for her 7th Birthday! She is ready for the treats, gifts and attention that comes along with it, the steak and mashed potato dinner she picked, and very excited for her mermaid pool party this weekend with friends & cousins :)
I measure her every year and mark it on a growth stick in her room so we did that this evening and quite honestly was surprised she only grew an inch this year at best.  Growth has been an ongoing "watch" item and we might have to take up again with her doctor and eventually see an endocrinologist like they have suggested.  She is tiny (only 37 pounds with shoes & orthotics on) but up until now has been growing at a steady rate (~ 2 1/2 inches) annually even though in the lowest percentile so we haven't been overly concerned.  We have the week off of therapy due to vacations & staff changes so they suggested some exercises and an app called "Cosmic Kids" which I think is yoga like for her we need to try out!  One huge accomplishment in the last week or so is her ability to walk up the front steps without assistance or railing!  We got her school supply shopping done and she is excited to find out who her 1st grade teacher will be tomorrow also!  
     

Thursday, August 15, 2019

Orthopedic follow up

One of the most common and severe problems for kids with Cerebral Palsy is hip dislocation/displacement so Morgan has been followed by Orthopedic doctor at Gillette over the years and today we had a follow up appointment with him post surgery.  She had a quick X ray of her hips (standing) and we spoke to the doctor for a while and discussed concerns with her right foot still dragging/turning out and some options (like casting again) we can discuss more with her rehab doctor in upcoming months.
Great news her hip X ray looks good, he showed and explained all of the things he looks for and pointed to everything looking fine and no signs of displacement!  He explained again the CP type & the Gross Motor function classification system (GMFCS) severity ratings (1-5) and how the risk of displacement increases with rating.  Morgan is level 2 and kids with level 1-2 typically have a 10-15% risk of displacement.  Usually they recommend annual X ray of hips to monitor but he felt since all looks good we can come back in 2 years :)
Other than that, its been more of the same - she continues with PT sessions about 2 mornings per week- one regular, one pool.  It does feel like she made very good progress for a few months and then sort of plateaued but will continue to work hard!  We went for a bike ride on her adaptive bike to the park tonight (admittedly haven't used as much as we should) and have really been focusing on making her do things independently like getting in/out of her booster seat, walking up stairs, dressing, helping with chores, etc.  Of course still hanging on to the last few weeks of summer, enjoying boating and she is even taking a couple of golf lessons with her brother.