I was just wondering about websites you have found useful for CP. Even blogs or anything really, would be great.

The boys are going to be a year old in about a week (9mths adjusted). Baby A & B had level 1 bleeds and PVL. So they are high risk for CP. Both of them made it into Early Intervention. We now have a referral to a Pediatric Developmental Specialist in a few weeks. Baby C had no issues while in the NICU, he did not qualify for EI (didn't meet weight qualifier by just a few grams). After his NICU follow-up clinic they resent him to EI and he now qualifies and the PT doing his eval even mentioned CP as a possible outcome for him. He will see the Developmental Specialist too, but it's not yet scheduled.

So what questions should I ask the Developmental Specialist? What things should I be looking for or talking about at that appointment. I kind of feel like EI has let me down. My coordinator is a little flaky but nice. I am peeved that Baby C is now having an issue and that they didn't do more to get him in the program. Also they only gave A & B a total of 1 hour of PT a month (30 min bi-weekly). So I want to be prepared for this appointment, but don't even know where to start.

Baby A & B are not sitting. They will roll to their sides in the crib. When not in crib they will twist to see what they want. B just started to roll to tummy this week, but always has an arm stuck and can't get it without help. My daughter did the same thing at first so not sure if it's CP related or just learning to roll.Baby A & B also have tightness in their shoulders so it's hard for them to lift their arms up and they aren't doing quite as much with their hands. They can open them, move toys from hand to hand and will even pick up puffs and bring them to mouth...but the don't like eating them. I've noticed A will actually jump his body off the floor to give his arm a little more momentum if he wants something that's up higher then he can reach. We can get them to go to hands and knees and bear weight, but don't like to stay that way unless we force them. They will sit after stretching and bear weight on their arms (tripod or whatever it's called). They do well, but can't be left unassisted as they'll only hold it for so long before loosing their balance.

Baby C has been rolling to tummy for a month and cruises around the livingroom getting into everything. (all of them were rolling tummy to back at 0 adjusted) He claps and does much more with his hands. He too loves to pick up puffs and eat them. He will go to hands and knees and hold it for a bit. Again he just doesn't want to stay there. For him it's easier to roll if he wants something so he just wants to get off his hands and knees and get moving. He too will sit if assisted and can hold it for awhile. He'll loose balance after awhile too or need help keeping it.

Next week we start A with 1 hour PT weekly. B & C will get it bi-monthly for an hour.

So any thoughts, links, ideas. I don't even know what the diagnosis process will look like. My husband is very against the thought of them having a CT scan or MRI. We know 2 are high risk already so why do dye or other stuff to them if it's not truly necessary. Although I heard from another triplet mommy this week that they may be able to just do a brain sono since they are younger.

Thanks!

Christina

Daughter born 1/4/09
BBB born 9/9/10 @ 27w 5d
Daughter born 8/14/12
http://schroeters.blogspot.com/

I don't know your particulars, but from the bleeds and pvl it sounds as it is possible.

Ours are 16 months born on 5-8-10. They were exactly 30 weeks. There was no traumatic pregnancy or birth. Head ultrasounds were done at 3 and 30 days with no evidence of any bleeds.

Ours were stiff and were not meeting their milestones. We were evaluated by Early childhood development. They referred us to AEA and private PT and OT at 4 months.

Our Pediatrician diagnosed two of them with CP at 9 months. He suspected the 3rd but was on the fence. He sent us to the Children's Developmental Clinic where they saw, Neuro, Ortho, PT, OT, Developmental Ped's and more. That happened when they were 11 months. They were all diagnosed with CP by the Neurologist. He diagnosed them without having an MRI. He did recommend having MRI's and also hip xrays. The reason for MRI's is to see what areas are affected and that will help to show how severe.

We had our MRI's 2 months later. Two have PVL, one with central white matter loss. 1 had a normal brain MRI but he is affected the most. He was the last to sit, crawl or walk. When they did the MRI's they did it right after a hernia surgery on the boys and our daughter was put to sleep. They didn't use contrast dye. They will have another in 1 year to make sure there are no changes.

We have a spastic diplegia, spastic hemiplegia left and spastic hemiplegia right. Remember that CP doesn't get worse. It is brain damage but doesn't change. It is what it is. Ours are now 16 months or 13.5 adjusted. They are all 3 walking. Our daughter wore AFO's for a short while and our boys may need a single AFO on opposite sides.

We have PT 5 X a month and OT 5 X a month. We have amazing therapist's but have changed from the ones we used in the beginning. I truly believe that without the early therapy they would not be doing as well as they are. We have also purchased therapy equipment for home use. It is a every day thing here.

It is hard to get the diagnosis. I was depressed and spent hours online researching and reading books. It took me a bit but I have come to terms with this. My job as a mom is to have a great attitude everyday and help them to be the best they can be. There are support groups if that helps. I have connected with a few people who's children are affected. Some more severe than others. If you would like to email me I can share some of the books that have helped me. Also if you have not applied for the Brain Injury Waiver, you can get that started. It takes 18 mos to 2 years on the wait list where we live. That will help with any unpaid medical, equipement, respite care, etc. smalltott@aol.com

Lisa T
bbg
5-8-10
30 weeks

Thanks for sharing your story Lisa. That's awesome that they are walking at 16 months. My singleton didn't start walking until she was 14 months old and she wasn't a preemie or anything.

I really feel like EI missed the boat on not getting us more PT early on. However, we start next week with a heavier schedule and I'm hoping to see improvements there. I can tell that the PT they have gotten has made a huge different. Our therapist has been requesting OT for awhile, but or coordinator just keeps saying that they don't do OT until at least a year adjusted.

I'll shoot you an email for those books. Thanks!

Christina

Daughter born 1/4/09
BBB born 9/9/10 @ 27w 5d
Daughter born 8/14/12
http://schroeters.blogspot.com/

If you think your coordinator is not the best, you can ask for a different one or your Pediatrician to write the script for OT. Mine have been getting both OT and PT 5 or 6 times a month since 4 months. We didn't even have a diagnosis at that point.

It is really hard to hear of so many people slipping through the cracks. They preach preach preach that early intervention is key in therapy with preterm babies.

I will get those books together and a few websites I found useful.

Lisa

My girls were born at 30 weeks, and Julia had a level 1 brain bleed and then PVL, and she has dystonic cerebral palsy. Kind of affects all of her limbs, but her right hand is mostly affected. What you describe is kind of what we noticed with our daughter - not just the missing milestones, but kind of weird movement patterns - poor head control, turning oddly to look at things, favoring one side, holding hands clenched, etc.

She's 2 1/2 and can sit for short periods unassisted using her arms to prop or leaning against a bench, she commando crawls and rolls front to back to front. She's been getting 1 hour of PT a week since 9/09 and we increased OT to 2x a week this past December (she'd been getting it 1x a week since 11/09). We're looking at getting her into a second hour of PT.

She has Duane's syndrome (an eye condition), and characteristics of that are a head tilt and head turn to compensate for poor vision. So. . .that doesn't help her already poor balance, which may have something to do with why she's not met more milestones. Her dad didn't walk until he was 18 or 19 months, and his nephew until 19 months, so that didn't help much either, probably!

We only had an MRI because at a year her head was enlarged so they needed to check for fluid in the brain. I'm kind of with your husband, I don't see the need to do a scan to confirm it, the doctors can usually do so just watching them develop, although they generally like to hold off until age 2. Sometimes I feel that everybody gets so caught up in getting an exact diagnosis of what specific type of CP the child has, when in the end it doesn't change how you you'll treat it.

The United Cerebral Palsy Organization (ucp.org) is a good site. I would just stay away from sites that are run or sponsored by law firms (usually you can tell because they offer free numbers so you can discuss lawsuit possibilities). They all seem to have the most dire information - your child's life will be terrible, your life will be terrible b/c you'll have to care for them forever, etc. I'm an attorney, and those sites make me want to puke.


Amy

Julia, ^Caitlin^ & Gabrielle



Visit us at http://onealaskanmom.wordpress.com

I've been following your blog for awhile now Amy. My oldest just turned 2.5 in June.

I was prepared I think to hear CP with the first two boys, but when they said it for the third I kinda lost it. Then a few days later I realized that it doesn't change anything. They can call it whatever they want. I already am doing PT and know what their limitations are, 'why' doesn't matter so much.

We had our first group PT session today and I think it's going to be a good change. I think they have a little more experience and more things to use during PT then where I had been going. Also we're doing a huge increase in how much PT they will be getting.

The boys are happy and healthy otherwise. I just want to make sure I'm doing everything I can be and that I'm not just relying on someone else to tell me what to do. My mommy instinct said Baby c not getting into EI was wrong, but they were the experts so I didn't fight it or look for a way to get him in earlier. Kicking myself now.

Christina

Daughter born 1/4/09
BBB born 9/9/10 @ 27w 5d
Daughter born 8/14/12
http://schroeters.blogspot.com/

I can see how having the third diagnosed would make you want to lose it. Gabrielle so far seems to have no problems with having been born so early, and with Julia's CP and Caitlin's death from the brain defect, my husband has said that if it were not for Gabrielle being "normal", he would have felt that we weren't supposed to have had children and it was some sort of punishment.

One of the most frustrating things to me is that for most of the non-medical stuff, it's so hard to know if it's really helping. Would they be worse off with out it? Would they be the same? Would they have eventually gotten to whatever point they're at now? So much of it to me falls into the "well, it's not *hurting*, so let's just keep doing it". Which is kind of why we're getting a second session of PT per week, partly to make the transition smoother when she ages out of EI in February, and also because, well, she's really far behind in gross motor skills - and is it because she's just slow, she'll never get it, or does her PT suck? Argh. It's a constant re-evaluation, whether what you're doing is enough, should you add more, take some away, hold steady.

And now I feel the need to go and update my blog! =)
Amy

Julia, ^Caitlin^ & Gabrielle



Visit us at http://onealaskanmom.wordpress.com

Lol I can only imagine. Since your daughters are so close in age to mine it gives me an idea of how things may be for our boys. As they've started falling more behind your blog and that perspective has helped me.

I personally have stopped blogging, but want to start again. I just don't know how. I see the other mothers here who's babies were just as early or close and they are standing and walking. It's hard.

However, the boys are so happy and healthy. I just have to change my mind set. Also most of our family has no idea, so as things become more obvious we're going to have to educate them on what CP is and isn't. I'm waiting for official diagnosis and whatnot yet though.

Christina

Daughter born 1/4/09
BBB born 9/9/10 @ 27w 5d
Daughter born 8/14/12
http://schroeters.blogspot.com/

Got a call today that the Developmental Specialist had a canelation and we can get all 3 boys in on Monday. I'm now trying not to panic. I have to kept reminding myself that a diagnosis doesn't change anything that's going on. It will just give us the reason why. Usually not knowing "why" is worse then knowing. So why does it seem to be the reverse now?

I guess maybe because if I can keep blaming it on being preeemie's then I have hope that one day they might magically be fine.

I can't even fill out a flipping baby book without getting emotional. With my DD I'd flip through pages and as I saw the different things try to remember when she did them because at the time I didn't realize that sitting on their own was a milestone. Now I flip the book and see all the things they aren't doing. I honestly think that I'd like to someday make a baby book that is for parents of preemies since milestones become the day they come off c-pap, get to wear clothing, move to an open crib, finally get to come home, etc. I suppose looking at it like that I couldn't be prouder of my little boys. They are my little hero's and I love them to pieces.

I am making my husband go with me though. Apparently this doctor is worst case scenario guy. We took a walk the other day and he was talking about wanting to go on a picnic with the boys, but when they are sitting on their own so it will be more fun for them. Then he gave a date that he thought that would be. He doesn't go to the PT appts he doesn't even get to be here for the EI evaluations. I was like, honey, you do realize that they may not be sitting by then, or at least not all of them right? I need his moral support, but I also need him to realize what we are facing and not thinking I'm just over reacting.

Christina

Daughter born 1/4/09
BBB born 9/9/10 @ 27w 5d
Daughter born 8/14/12
http://schroeters.blogspot.com/

Hi!
I'm an "old" member who doesn't check in often these days. My trio is now 13 and was born at 27 weeks

Two of my kids have CP. My son is a full-time wheelchair user. He has spastic tri-plegia and dystonia. One of my daughters has left hemiplegia. She is very mildly affected - many people don't even notice.

I own a Yahoo group called OurCPKids. I started it many years ago. There are tons of great people there and several sets of triplets.