Morgan is 5 today!
This is always a difficult day for me. On your child's birthday you are supposed to have memories of one of the best days of your life, the day your child was born. For us it is still very painful to remember this day 5 years ago and the fears we had for her unknown future. I am not sure if time will heal or if these painful memories will always remain with us. I try to focus on how far she has come and I look her today and think about how much hard work we have put in to get here! Morgan on the other hand has been looking forward for her birthday for months! She has a 3 day celebration - family birthday party on Sunday, lunch date & picking out a present at American Girl Doll store with Mom on Monday, and tonight she informed me we need to pick up cupcakes for pre-school tomorrow because "a lot of kids bring treats to share with the class for their birthday".
I was flipping through pictures from a couple of days ago of Morgan and her brother Max playing in puddle in our driveway in their rain gear. I realized not even one year earlier we have a very similar picture of them doing the same but Morgan still had her walker. Today she is walking mostly unassisted and working on climbing stairs and jumping. Her right leg is still very weak and recently had a second round of botox injections in her right leg which does seem to help relax her muscles slightly. Cognitively she is doing very well and working with OT on her fine motor and drawing, writing, etc. We will hold her back from kindergarten to give her another year to catch up with gross and fine motor and grow (she is only ~32 lbs/38 inch tall and tiny for a 5 year old)! She continues to attend private OT/PT sessions every other week and did pool therapy this summer which I think really helped- she swims now in her lifejacket! Just a few weeks ago she would only sit in the shallow water or held a death grip on whoever was holding her in the pool/lake and would not let go :)
We have a few busy weeks ahead (life with a special needs child!) - next week an appointment for Orthotics, an appointment with sleep & behavior specialist Dr, OT/PT, a follow up MRI & neurosurgery, ECSE school starts, and we are planning to try a new adaptive Dance class! Her MRI is to check her ventricles again following the shunt setting change her last visit. She seems to be doing very well so I am cautiously optimistic.
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.
