We spent the afternoon up at Gillette's with Morgan for several appointments - OT pre-op assessment, ATP fittings for prone cart and knee immobilizers, labs (painful), and a tour with the a child life specialist. She got to see the room we will stay in for the next several weeks and learn about the facilities, Ronald McDonald House, all of the fun activities they offer the kids, her daily therapy & school schedule (Mon-Sat) etc.
The surgery is scheduled for 1:15pm tomorrow afternoon (Wed) and we have to be there to check in at 11:15 am. SDR surgery is expected to last for 3 1/2 hrs and will be in post-op for a bit until she is awake and then up to her room in rehabilitation unit where we will stay. She will have to lay flat on her back for ~3 days and then on Saturday should be able to get on the prone cart to get out and start moving a little.
I will post updates after surgery starts and following tomorrow. If you sign up for email alerts on this blog I think they are a day delayed so can just check back for updates!
Now off to pack our bags and get her in the Dyna-Hex bath. She will get another bath in the morning.
We also want to thank so many who have reached out to offer help and thoughts/prayers, so grateful to have amazing family and friends to help, to sister-in-laws for setting up a meal train and everyone contributing! Please continue to send good thoughts and prayers for the gifted hands of her neurosurgeon and for Morgan and a speedy recovery!
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.
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- Gillette's Acclimation
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Sending positive thoughts and praying right now for success, healing, and strength. You've got this, Morgan! (and mom, dad and bro!) :)
ReplyDeleteDear Lord, please be with all the doctors this morning. Give them wisdom and strength to work on little Morgan’s body. Protect her from any infection or harm. Be with her parents as they continue to communicate with the doctors. Give them clarity and strength as they continue to make wise choices on Morgan’s behalf.
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