Morgan's Mission: September 2022

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.

Tuesday, September 6, 2022

PCR results & cancelled surgery

UGH. Morgan's COVID PCR test from Saturday morning came back positive and we had to cancel the surgery this morning :(

She doesn't have symptoms at all and I have done two at home tests on her (one before the PCR test out of curiousity and one this morning after it came back) and both were negative. I spoke to the nurse this morning and apparently the tests are highly sensitive and would detect if she had within the last 90 days so she must have had recently.

She was quite upset when we broke the news and "tell them I'm not sick", she is on a bit of an emotional rollercoaster after all of the prep and mentally preparing I think. Will update when rescheduled.

Monday, September 5, 2022

10!, 4th Grade, Tying Shoes & Surgery Prep

Confession...I've had a hospital bag packed in my closet and ready to go at any moments notice for several years. A small bag with an overnight change of clothes for Morgan and I, toiletries, some small toys etc. I'm not typically the superstitious type but probably a Hydrocephalus mom lessons learned, type A, thing after we ended up in the ER unprepared one too many times and now I'm just afraid to unpack it! I discovered this was actually a common mom practice after a fellow hydro moms brought it up this summer over lunch at the hydrocephalus conference and felt much better about myself! Anyway, I pulled this bag out of my closet yesterday and happily removed the toddler sized clothing after several years collecting dust to update for Morgan's surgery tomorrow.

We've had a bit of a fiasco scheduling labs, Pre Op , etc and timing it all to prepare for sugery. Note to self, do not schedule surgeries the day after a holiday weekend.

Tonight we gave Morgan her evening surgical prep bath, removed nail polish, jewelry, answered a lot of questions, and all ready to go for bright and early tomorrow morning. Please keep Morgan, us and her surgeon in your prayers for all to go well and a successful surgery!

Morgan turned 10 on August 21st and had a fun movie night and sleepover themed birthday party with her amazing friends. She started 4th grade this week, is looking forward to her auntie's upcoming wedding with her flower girl duty, and her OT shared a "YouTube" video from last spring of her finally tying her shoes! I wasn't sure she would ever be able to accomplish this feat with her fine motor delays but yet another amazing accomplishment!

Morgan's Mission