D Rolling Video

Cerebral Palsy and Constipation

We didn't go to Hollyridge today because D was struggling to poop from 7-8am and then fell asleep. She has been napping for almost three hours at this point.

D has struggled with constipation since I stopped pumping/breastfeeding her...at about 8 months. When she was first born and in the hospital, the nurses were giving her formula for awhile because she was having digestion issues. She was on formula then, too. Now she is on whole milk and whatever else she gets during the day and she is still constipated. I feel like I have tried everything and none of the doctors have been able to give her any relief.

I'm just feel so horrible for her when she is in pain and pushing so hard. Does anybody have ANY suggestion? I feel like I need to start at the beginning of the list of "solution" again.

I've read that constipation can be related to the cerebral palsy, but what about a solution, what about some relief?

Great NEWS!!!

Every Friday morning at 9 Darsie receives occupational therapy in our house from a wonderful woman named Diane. Diane works through the Washington Elks Therapy Program. In the past few months there has been another organization trying to get the Elks to invest the money they put towards the therapy program towards helping to build a pediatric neurology building. For awhile, I was told that the continuation of the therapy program did not look so promising. Many of the families involved emailed or sent letters and photos trying to get this program continued. It really does provide a valuable resource to many in our community. It is a free service and fills in the gaps when children cannot get therapy through the regular channels (like D..who was on a waiting list for over six months before we heard of The Elks).

Anyways, sll of the involved lodges voted and met last Friday at a big convention and it passed that the therapy program will continue for at least another year. HOORAY!

Mr. Larry

Every Thursday, D and I make a 30-minute trek in the opposite direction to Gig Harbor where she goes to Peninsula Pediatric Therapy to see Mr. Larry, her physical therapist. In the beginning, D would have nothing to do with him, but she has slowly warmed up. He is very patient which her and lets her take her own time getting used to him. It is wonderful. He lets her come in a little early to see another little guy do his therapy and I think this helps D see that it can be fun and exciting.

Today, they worked mainly on right hand use and also kneeling. It is hard for D to get into a hands and knee position because of stability issues in her right arm/hand. She is able to bear weight on it, it is just difficult. She was having a glorious time opening and closing a toy barn and playing with the different figures.

Our homework for the week is to practice lots of kneeling and to massage her right hand to try to get her thumb to loosen up again. For some reason, it is tight again.

AAP 12 Month Developmental Milestones

From the AAP

Developmental Milestones by the End of 12 Months

CARING FOR YOUR BABY AND YOUNG CHILD

Social and Emotional

* Shy or anxious with strangers - YES
* Cries when mother or father leaves - YES
* Enjoys imitating people in his play - YES
* Shows specific preferences for certain people and toys - YES
* Tests parental responses to his actions during feedings. (What do you do when he refuses a food?) - YES
* Tests parental responses to his behavior. (What do you do if he cries after you leave the room?) - YES
* May be fearful in some situations - YES
* Prefers mother and/or regular caregiver over all others - YES
* Repeats sounds or gestures for attention - YES
* Finger-feeds himself - YES
* Extends arm or leg to help when being dressed - LEFT SIDE ONLY

Movement

* Reaches sitting position without assistance - NO
* Crawls forward on belly - NO, scootches some, but no crawling
* Assumes hands-and-knees position - NO, she tries to get up on her knees
* Creeps on hands and knees - NO
* Gets from sitting to crawling or prone (lying on stomach) position - NO
* Pulls self up to stand - YES, if holding onto my fingers
* Walks holding on to furniture - NO
* Stands momentarily without support - NO
* May walk two or three steps without support - NO

Language

* Pays increasing attention to speech - YES
* Responds to simple verbal requests - ??? I know she understands some of what we say
* Responds to "no" - YES, she cries
* Uses simple gestures, such as shaking head for "no" - She has nodded no once
* Babbles with inflection - YES
* Says "dada" and "mama"- YES, she has said lots, but she only says things once or twice
* Uses exclamations, such as "Oh-oh!" - Yes, she squeals
* Tries to imitate words - YES

Cognitive

* Explores objects in many different ways (shaking, banging, throwing, dropping) - YES
* Finds hidden objects easily - YES
* Looks at correct picture when the image is named - I don't know....
* Imitates gestures - Not really, she waves though!
* Begins to use objects correctly (drinking from cup, brushing hair, dialing phone, listening to receiver) - YES

Hollyridge

Every Tuesday D and I make the 30-minute trek to Bremerton to attend Little Tykes at Hollyridge. There, D gets to interact with other little ones that have developmental delays as well. While I like going, it also is a bit of a downer. D is the only one that doesn't crawl and most of the other ones walk as well. But, it is a good place and it is fun for D. Today she got to ride on a bouncy horse, work on balancing on a suspended platform, eat carrots, and play with bubbles.

We scheduled her 6-month Hollyridge review for the 7th of February. She also has one with University of Washington coming up on March 1st. These reviews are such a double edged sword. I love that through them she will get the help that she needs but it is so tough hearing about your child's issues. At D's last UW assessment she got the CP diagnosis...maybe that is why I am dreading these reviews so much. Also, I was looking at her "goals" today and the only one she has fulfilled is being able to hold her own bottle.

Fun with Rice

Rice Four
Originally uploaded by Shannon Finley.

A couple photos from our most current sensory play session using rice and toys. You can see her hand brace in the lower right hand corner. She tends to keep her right hand clenched, so she wears this a couple hours each day.

16 month status

D is a very well accomplished roller. She rolls both right and left and is also pivoting well. She has a hard time bearing weight on her right arm and is just now starting to try to push up onto her knees. She sat at 12 months but still has some balance issues when she needs to shift her weight. She loves to "walk" but cannot stand independently without holding onto something.

Intro!

After many long hours spent searching for more information on the web and not being able to find much, I decided to create the resource I so need.

My daughter was born at 28 weeks and had a grade 4 IVH, resulting in hemiparesis cerebral palsy on the right side. She was diagnosed at 11 months.

She is now 16 months old and we are doing some sort of therapy three times a week. Tuesdays we go to Hollyridge, a center for developmental delays, for a group preschool. We work on fine and gross motor skills, sensory, etc.. On Thursdays we go to physical therapy and on Fridays an occupational therapist comes to our home.

I'm hoping to create both a resource for others and record for my family.

Feel free to email and ask any questions!