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development and brain bleeds?

Feistylioness78
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I am trying to find out when you babies it their milestones after their brain bleeds. Christian had a grade III and IV. He will be a year in 5 days and will also be 9 adjusted. He does not still on his own yet, won't bear weight on his arms or legs unless it is on his terms. He does not crawl but does his own version of getting to a different place if he wants to. Please let me know what kind of brain bleed, actual/adjusted age and when milestones were meet so that I can get an idea. Thank you so much.

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Surgery Falls Physical therapy

11 replies

babymagik18

Marc will be 1 year on christmas day. He had a severed grade 4 bleed on the left with subsequent PVL. He had a grade 2 on the right. Although he tested with no delay last monday at dev. clinic he does have cp affecting his right side, more his right arm than leg. He is in aggressive therapy 4 days a week and soon to be 5, once or twice a month it will be 6 days a week. We feel his alternative therapy has yeilded the most progress. If you want to read about what he is in or see his MRI scans you can find all the information on our blog. Best of luck with your beautiful boys!
http://babymagik18.blogspot.com/

leakeama

I have twins they are were born at 24 weeks. There actual age is 21 months. My one son and grade 1 of the left side. He started sitting at 11 months and crawling at 14 months. He just got the hang of walking just recently. He is diagnosed w/CP.

Second son doesn't have bleeds, but has PVL on right side, probably due to being born code blue. He can't sit, but prop sit currently and still falls over (he also had exploratory surgery to figure out some bleeding. His stomach muscles are weak as well). He moves around in way he can only move. He can roll. Obviously he has CP too. We have many therapist working w/both boys and many different types of doctors. The first year I was stressed, but I feel now I am calmed down and have learned things will happen on their time. The roller coaster ride does not end in the hospital.

sarboo

My twins were born at 26 weeks. My daughter had a grade III brain bleed on the left side. When she turned one year, she was not crawling and had even stopped rolling around. She started sitting by herself around 11 months. She began to crawl when she was about 14 months and began to walk around 18 months. They are now almost 20 months old. My son (didn't have a bleed and is about 6 pounds heavier) has always been more physically advanced but my daughter is SO vocal - singing the alphabet, saying hi to everyone...We had lots of help - we saw Early On once a week and then my son was recommended to also go to a local hospital for some more intense physical therapy - so I brought them both. Now, we have an early on therapist who comes once a month n who wants to "graduate" my daughter from the program. However, my son is having a slight speech delay so since they are coming for him, they are going to continue seeing my daughter. I too am beginning to feel like I am calming down, but the first year was so difficult...the last poster is right, the roller coaster sure doesn't end in the hospital. Good luck!!!

KellarsMommy06

Kellar had bilateral grade 3 ivh as well as cerebellum damage. He started sitting around 9 months or so I believe, but he didn't have the reflexes to catch himself if he started falling. He started crawling but not correctly around 1 year I believe and within a few months he was crawling correctly and pulling to stand, he started taking steps around 17 or 18 months and then took a break and thought crawling was the way to go. With a lot of determination from me and picking him up to stand every time he sat to crawl he started walking w/in a couple of days. I have a website that has from day 1 till present if you want to take a look..Good luck to you and your little ones...
www.kellarreid.com

mom21

Gracie was born at 25 weeks and 5 days. She had a level 3 bleed and later was diagnosed with a PVL. She first sat up on her own in November of last year so she was about 10 months actual 6 1/2 adjusted. She started crawling on December 13 - I guess she wanted to get to the presents under the tree. That was 11 months actual, 8 1/2 adjusted and she started walking a step here and there at the end of June, really took of on July 5th so 18 months actual, 14 1/2 adjusted.

Since she is our only child, I never had anything to really compare her to and took our therapists advice to just keep focusing on working with her on her therapy rather than focusing on the timelines since all kids are so different. We basically graduated out of PT in September since she is walking and isn't having any trouble with the different surfaces.

We have spoken to our doctors at great lenght about the possible impacts of the bleed and the PVL. Our neonatologist that we still see every year has spoken to us alot about how resiliant baby's brains are since they are still developing - It is somthing I think I will always worry about but I also think that since we know that there is a problem, we work hard to make sure that we are really working with her on her skills and milestones but without worring so much about when she hits them - just that she eventually does.

Feistylioness78

How do you get more therapy and in home at that. Christian goes half an hour twice week and the once every other week I take him to a sensory room and on alternating weeks his teacher comes here. He is currently only at risk for CP. He does not prefer one side over the other. He will do things and then just stop doing them. He has learned how to manipulate get get out of doing his PT/OT, only works with mommy though not the therapists. They will do not in home and I will need it more when Brennan comes home. Thanks for your help I just wanted to get an idea.

lalacakes

Hi,

My son is 14 1/2 months actual, about 11 months corrected, and he is making slow progress. He had a bilateral grade III/IV bleed and gets therapy once a week through EI and goes back to the hospital to see his PT from the NICU about 2 times a month - although we are working on getting him approved for weekly visits with her. Jacob is pretty delayed. He can sit for several minutes by himself but I have to be close or have pillows around him because he will fall back and not even try to catch himself. We are working on strengthening his arms and his trunk with the EI PT and working more on things that will encourage him to think of his legs separately instead of using them together. His NICU PT explained to me that when he bounces up and down on my lap (or if he were in a bouncer/exersaucer which both PTs have forbidden) that he encourages the use of his legs together which is not a good thing since walking uses the legs independently. So she does things with him like making him kneel on one leg while the other leg is bent in front of a step with toys on it. It is so sad because he LOVES to jump on my lap - his face just lights up! One day my oldest son brought the exersaucer up from the basement while I was taking a shower and put Jacob in it. I came down a while later and there was Jacob, happily jumping up and down and loving every minute of it! But, since he is almost one we can't have him instill that movement in his head or we will have an even harder time getting him to walk when the time comes. His therapist does think that he will walk one day, but it is just taking us forever to get the sitting up thing to work. Some days I get discouraged but when I hear people say how amazed they are at how much he can do given the severity of his bleeds I am so happy for him. I really believe that Jacob will accomplish many things and if he can't walk as well as his peers he can at least walk. Back when we were told about his bleeds I feared the worst but I had to let go of that fear because it was eating away at my strength and all of us know how important having strength through this journey is! Good luck to all of you and to your little ones!!!

ndskin77

I just had my ifentical twin boys October, 30, 2009. Twin A - Benjamin is 1.3 # and Twin B David 1.6#. Ben has a leval 4 bilateral bleed (both sides) and 4avid goes back and forth b/t a 0-2 both sides. One test was a 1 the next said the opposite side had a 2 but a zero on 1st side. Which is good. They tell us my little Ben will have severe CP along with no thought, voice etc. Being he has the worst scenerio. Out of love we have decided to prepare to take him off vent. I know in myheary this is the best decision for my boy- sevete CP is very painful contraction of muscles etc along w/ all other vegetative state. How do we move forward? I kniw this is best but is it God's will?

Bklynmom

Hi,
Zoe is 14 months actual, 11.5 adjusted. She had a grade 4 ivh with pvl on the left side. Now she has been diagnosed with mild CP affecting her right arm and leg. She sat around 7 months adjusted, but couldn't get to sitting position by herself till at least a month after that. She crawled at 9.5 adjusted (1 actual), and now she's pulling up and cruising some but doesn't have good balance, so I don't think she'll walk too soon. Also, she can say hi and daddy (for about a month now), has been waving for a long time, just learned to clap (left hand on right fist), and is still working on pointing. She gets 2 half-hour OT sessions a week and one PT session at home through EI.

Feistylioness78

Don't let the docs force you into a decision. If we had done that we would have none of the boys. They wanted us to terminate Alex and Brennan at 21 weeks because they figured they had no chance of survival. We lost Alex but we still have Bren. After Christian had his bleeds he was having severe apnea spells told he would be on the vent for life and not have one. They found out the medication for the PDA did not close it all the way and once they closed it he was fine. If we believed the dr's we would have killed him. Bren had his share of problems and everytime we went in to have a meeting they would tell us in not so many words that he would die. He is still with us as well. Your babies will let YOU their mother know when they can't do it anymore. How are they doing?

lchang4

I agree with Feistylioness78. My Twin A had grade 3 and 4 IVH and PVL damage to the cerebellum. We were given grim reports. They suggested pulling the plug numerous times because she had other issues such as chronic kidney disease and was on the osillator vent for 6 weeks. She's now almost 14.5 months old/11 months adjusted. She had an MRI done in July and her IVH has completely resolved. She's in physical therapy twice a week. She can't roll over very well yet but she can sit up straight at about 7 months adjusted. At 10 months adjusted, she can sit and turn counter-clockwise and end up at different places. Right now, she can scoot backwards on her tummy. Her legs and arms are strong. It's her core that's weak and we're working on that.

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