4 year old with spastic quad cp

[babymine530]

Hi everybody.  My name is Jeanette and I'm mom to a wonderful little girl with cp, Claire.  She was born early at 29 weeks from what they now know was incompetent cervix.  I'm pregnant now with my second and have officially got the diagnosis because it already started thinning around 22 weeks.  They sewed it shut, put me on bedrest, and now everything is going great. 

When  Claire was born the head CT showed PVL.  They told me it could lead to cp but we didn't get that dx until she was a year old.  She began therapy then and does pt, ot, and speech.  She has has two corrective eye surgeries due to severe strabismus.  She is classified as moderate to severe.  She has good head control and is pretty good with her right arm/hand.  She can feed herself finger food and pick up her drink.  She really isn't mobile at all besides rolling.  She is nonverbal but does have a couple words she saids periodically.  Despite all of that she is one of the happiest kids I know.  She has a smile that will light up a room and has the best disposition.

She had a dorsal rhizotomy done earlier this year.  It has helped her a lot with sitting.  I have to be honest, I am a little disappointed though with the surgery.  Not that I'm sorry we did it--I'm not.  I was just hoping so much that we would see faster bigger results and it seems like the progress is so slow.  I am thankful that sitting is getting easier for her.  She still cannot sit independently because she will tip over but she can maintain a sitting position for several minutes with someone next to her to ease her down when she tips.

I still have a very hard time with coping and accepting things.  There are so many ups and downs.  Even though she's happy I worry about her missing out on things.  It breaks my heart when kids are playing around her and she's stuck in her wheelchair just watching.  I wonder if she's longing to be able to do that too.  Does she understand how she's different?  Will it get harder as she gets older?  I want to make it better for her and I can't stand being so helpless.  I struggle with the loss of it all.  And I'm scared to death about the new baby.

I feel like I should be okay by now.  She's four but sometimes it is as painful and raw as it was in the beginning.  I wonder if it ever really gets better.  Or will it always hurt.  Will I always want to run away screaming from other moms talking about their kids doing all these things that mine will probably never do.  Will I ever be able to accept it just for what it is and be happy about it?

[tegansmomma]

Hi Jeanette, welcome to the group.

Your story really, really resonates with me. My son just turned one, and has HIE and is facing a possible diagnosis of CP as he gets older. You are further down this road than I am, so I really don't feel I can give any advice but I can say that I completely understand where you are coming from, and my heart just aches for you.

I don't know if it gets less painful, but for me I've started to see the good things. The biggest one for me is that I really do appreciate everything my son does. The first time he moved his arms on his own I cried. The first time he reached for me I bawled. I can see him making improvements on a weekly basis and it makes my heart just burst with pride and love. The pain is still there, I don't know if it ever does go away. But I know he's MY baby and I love him with all my heart, as I know you love Claire.

I hope you meet some excellent mothers in this group. They are caring and compassionate and you are welcome here!

Amy

[zolanmel]

welcome to our group

[sammygrl77]

Welcome to the group. My DS is almost 3 with spastic quad cp . He was also born at 29 weeks due to a placenta abruption. He has a twin sister that is physically normal.

I'm not sure if the pain ever goes away. I think it will always be there a little. That being said, if it is taking over your life, then seek counseling. I try to focus on the positives, which really helps. I have those twinges of pain here and there. Especially when DD is working on riding a bike or potty training.