Developmental Milestones

[jonathansmom]

I know I shouldn't be doing this because "every baby develops at their own pace" but I'm just curiouse. When did everyones' baby's hit all of there developmental milestones?

My son is 6 months old, L5 spina bifida with hydrocephalus. He started rolling over back to front at 4 months, he hasn't rolled front to back yet. He can sit up for a few seconds on his own without support, he's making sounds but not really babbling yet, he pushes up with his hands while on his belly but hasn't really started to try to move towards any toys yet. He doesn't really put any pressure on his legs when we hold him up. Occationaly when he's really excited he'll straighten them and put pressure on them for a second or two. He can lift his legs up and play with his feet when he's on his back.

Another question...when did your kids start wearing leg braces??

[kali]

hi, I am sure every baby with sb goes through the milestones at different ages. my son sat by hiself at 9 months and started to crawl around one and a half, but he dragged his feet and legs behind him, he wasnt able to go up on all 4's until almost 2. around 3 he started to crawl on all fours, and stand up holding on to things. He took his foot step by himself on his 4th birthday, and he has been walking with a limp ever since. He can walk without braces but it is added protection and extra support.
I was always amazed with every milestone....

[Barb]

Wow, what a terrible mom I feel like right now but since C is 9 I have completely forgotten! I do know that he walked with a walker right after he turned 2. Don't remember when he independently walked. I know all of his milestones were late in coming...

[Dodger67]

I'm 40 now. I have photographic evidence of me walking with braces and crutches at my aunt's wedding when I was 2 years old. I could only sit up after a Psoas Transfer operation, not sure when that was done, but I guess somewhere between 6-12 monts. My lesion is at L1-2. My parents can't remember the details of my milestones and early surgeries - its all a blur after so many years.

[Barb]

Nice to hear I am not the only one. I am sure that I could figure it out from pictures but, hmmm, I am too lazy for that ;)

[Dodger67]

Its called CRAFT Syndrome:confused:
Everybody gets it - some sooner than others:eek:
It could even be regarded as a "developmental milestone" with the accent on "mental"!:cool:

[lolathechecker]

I'm 40 now. I have photographic evidence of me walking with braces and crutches at my aunt's wedding when I was 2 years old. I could only sit up after a Psoas Transfer operation, not sure when that was done, but I guess somewhere between 6-12 monts. My lesion is at L1-2. My parents can't remember the details of my milestones and early surgeries - its all a blur after so many years.

hey you said your lesion is at L1-L2, and i was wondering if thats the only places that are affected. i just had my baby last week and they told me her defect started at L1 and ended at L2. she has hydrocephalus but they havent put in a shunt yet. she can move around really well. she has no movement or feeling in her feet or ankles. and one of her feet is twisted funny. but other than that, shes perfect. they are going to do a head ultrasound tomorrow to decide whether or not to put the shunt in.

[Barb]

WHAT? You had her??? Details!!!! :eek: CONGRATULATIONS! hey you said your lesion is at L1-L2, and i was wondering if thats the only places that are affected. i just had my baby last week and they told me her defect started at L1 and ended at L2. she has hydrocephalus but they havent put in a shunt yet. she can move around really well. she has no movement or feeling in her feet or ankles. and one of her feet is twisted funny. but other than that, shes perfect. they are going to do a head ultrasound tomorrow to decide whether or not to put the shunt in.

[Dodger67]

The twisted foot is a "clubbed foot" the sooner it is fixed the better.
Areas affected, just a brief summary:
bladder, bowel, genitals (dunno wheteher its the same for females). lumbar scoliosis with weakened abdominal muscles, weakened leg muscles from hips down, total paralysis below knees, limited sensation on front of thighs (lap). No sensation from butt down back of thighs (very high risk of pressure sores!!! - I sit on a $1000 seat to take care of that).

[mommy2cnj]

i just had my baby last week.

Congratulations, girlie(s)! I bet she's just beautiful!! :D;)

On the level note, both of my kids were dx'd at 3 different levels. The latest has put my kids' levels pretty close (where used to be, my youngest was at a lower level than oldest).

The first time they changed their levels, I was told that on one side of the spine, the hole may be extend to a higher level than on the opposite side of spine. This time, the doctor said now that the kids are grown up and they actually cooperate as far as, "Kick me as hard as you can.....let me see how strong you are".....(them kinda things), they can truly see more and more what their true function is, and therefore be able to place their level more accurately.

*shrugs* Just thought I'd mention this.

[kali]

congradultaions!!! my son also had a twisted ankle at birth, and no feeling at the ankles or feet. He wore a splint on his ankle for months, that I was showed how to remove and do myself. so that I could exerise his feet everyday. by the time he was 6 months the twist in the ankle was gone. huggsss

[lolathechecker]

wow. thanks dodger. she seems pretty high functioning, she already crawls around (sorta) they cant keep her on her little pad in her bed. she can get up on her knees and is surprisingly very strong. she has no movement in her ankles and not alot of feeling in her feet. its strange, they prick her with a needle and she doesnt notice, but if you pinch her toes, she pulls her feet away from you. the open part of her defect burst when they pulled her out. and the doctor said it was the biggest one he had ever seen. her head circumfrence has gone down since birth, so we dont know if thats just swelling, or hydrocephalus going down. they are going to ultrasound her head today to decide whether or not to place a shunt. i'll let everyone know how that goes and try to post a picture.

[Barb]

Carters feet were the same way. We had a tendon transfer surgery done at around 2.

The foot sensation is actually common in SB. It was explained to me that pain and light touch travel on two different nerve tracks. You can take blood from C's feet and he doesn't feel it, but don't tickle his toes :)

[jonathansmom]

Congradulations! I remember those first few days after our little guy was born. We were just amazed at every move that he made. :-) Jonathan didn't get his shunt until day 7 when the stiches on his back burst. The CSF was collecting in his back, not in his head. They has to reclose his back and put in a shunt so the fluid would drain properly...that was the scariest day so far. I'm just amazed how quickly he has bounced back from all of his surgeries. Babies are so strong!!

[Dodger67]

What is your little darling's name?

Good luck with the head scan - my pressures went down to normal after a couple of days - no shunt.

Your doc's remark that her lesion (a fairly common lumbar) is the biggest he's seen has me wondering if he's actually seen many at all? Does this dude really know his subject well enough?

I supose with folic acid pills and routine testing many are diagnosed very early in pregnancy and terminated, births are a lot rarer than they used to be. There was a time when most gp's, obstetricians, etc used to see a few every year. Nowadays we are academic curiosities!:p

According to the nurse who assisted at my birth and looked after me for the few days before I was flown to the "big city", I was also a strong (and very loud!!!) newborn. They waited 3 days to see if I was going to live before going to the trouble and trauma of lesion closure surgery. Way back in 1967, when anaesthesia and surgery was a lot cruder and traumatic than it is today.

You owe us photos!:D

Just to be fair I'll post my mugshot - The good looking one is my girlfriend. http://farm3.static.flickr.com/2402/2377359765_d4c81fd334.jpg

[Michelle]

hey you said your lesion is at L1-L2, and i was wondering if thats the only places that are affected. i just had my baby last week and they told me her defect started at L1 and ended at L2. she has hydrocephalus but they havent put in a shunt yet. she can move around really well. she has no movement or feeling in her feet or ankles. and one of her feet is twisted funny. but other than that, shes perfect. they are going to do a head ultrasound tomorrow to decide whether or not to put the shunt in.

I can't believe you had her!! That is amazing...I'm back to work so I haven't been able to check in as often as I used to. CONGRATULATIONS!!!! Please post some pictures if you can!!! I am so happy for you. What did you name her? If it makes you feel any better Jack had a huge lesion...it was mostly what they referred to as "transitional skin" and the opening itself was only about 2 cm. I know this is a really busy time for you, but I can't wait to hear all about her!

[Dodger67]

Sniff! Sulk! Pout!
Nobody thinks my girlfriend looks nice.

[kali]

you both look sweet together...goodluck and best wishes

[Michelle]

Sniff! Sulk! Pout!
Nobody thinks my girlfriend looks nice.

I think your girlfriend looks wonderful!!! I think its so cool that you we're able to post a picture!

[Dodger67]

Awww thanks ladies!
Would you believe she's turning 50 in 2 weeks and still looking goooood!
So how about it - who's next with pics?

[Barb]

I am sorry. I never saw this thread. Thanks for the pic....boy did you get lucky :p

You can see my boring family life anytime at the blog in the sig.