View Full Version : Developmental milestones, frustrated much?
02-18-2010, 12:04 PM
Please tell me I am not alone!! Anyone else pulling their hair out?
Share your inchstones!! :D (Post about Developmental Milestone frustration can be found on my blog, link in siggy)
02-18-2010, 01:16 PM
OH, I like that, inchstones......and I read your blog about how it is at the doctor's appointments - that was def. my experience for many years with Robin, and that's with a really great pediatrician - I guess they feel they have to go through the "list" ( and I sometimes felt like saying, yes, well, he's baby 4 of 5, I've seen these before, and in case I wasn't already aware, I am reminded on a DAILY BASIS BECAUSE HIS TWIN IS HITTING OR EXCEEDING THE MILESTONES, THANKS) When R. came home from the hospital he was 25 months old and maybe more like a 9 months old - could sit and get to sitting and that was about it - and his twin was motoring around like, well a 2 year old). I remember what a big day it was when he pulled himself to stand with no help! Just to see him standing by himself was big! More rececently, when he says he's actually hungry, I am ecstatic - and probably rush to cater to what he wants to eat more than I should, but can't help it. Thanks for writing about your perspective, nicely said!
02-18-2010, 01:25 PM
Our pediatrician has a handout the med assistant/nurse who takes the up-front information is required to hand out at each well baby visit, and they're required to ask all the questions on it. They've been pretty laughable thus far.
The 18 month one included things like jumping - Alexander wasn't even walking.
At a year, it was "child should be transitioning from formula to milk, and from bottle to sippy" my response: we're lucky he eats at all - don't push it :)
02-18-2010, 01:53 PM
yes! I just posted this on off topics, I wish there was a place for just this, I would love to hear some stories of people who have gone through this. Jasper is just about 15 months, and he can't quite even hold his head up, let alond try to sit up or walk. He has low muscle tone, but he also has been ina hospital bed for about a year recovering from different surgeries. I am so proud of his inchstones :), but I would like to hear we are not alone in our struggles. That people overcome low muscle tone and can do ok. Ihave a niece with low muscle tone, and everyone always says, well look at her, and it's apples and oranges, we are SOOO different, she is very healthy, except for the lmtone...
02-18-2010, 02:09 PM
I'm right there with you all!
Logan is 11 months old, has spent about 5-6 months hospitalized at various times. Before the seizures started in September, he seemed to be progressing better, but after that first set of seizures and Infantile Spasms...wow...back to square 1. I'm excited when he lays to the left instead of the right! :D
We are just getting back to tummy time...and he wants to roll so much. He can get the arms over...he can get the legs over...he just can't get the middle over!
Wow Janis, you have stated the well child appointment very well. I too celebrate all the inchstones that Joseph hits.. and even more so the ones that the doctors said he would never hit.
02-18-2010, 05:45 PM
Well, ladies, I feel like the old timer because Donovan will need to have a 7 YEAR well child exam soon. So many milestones have passed us by, it's a blur at this point!:rolleyes:
Anyway, I think the point is if your child makes progress...Donovan has been slow and steady (emphasis on the slow part), but at 2 1/2 years old he really started leveling out. Our EI PT and OT really began to push me to see a neurologist at that point. I am very glad they did because that was when we started looking at autism. Our kids are definitely writing their own books, but keeping on top of development, I think, is so important because there are so many issues that come to light with time. We also found out that Donovan has missing parts of his cerebellum too, at about 3 years of age. They are very small parts, so that they weren't discovered sooner, isn't too surprising, although you would think that all the MRIs of his head/neck/spine, etc. would have shown something.
Donovan finally walked at about 2 1/2 - 3 years of age. It was a long journey and there are still lots of things he is behind in now! I have found over time that just trying to keep Donovan active and stimulated is as good as any "therapy" time.
You guys are doing a great job!!:grouphug:
02-18-2010, 08:12 PM
Eric is almost 3 1/2. I was told he'd probably never come off the vent, decann, walk, talk or be much more than a vegetable. He started walking almost a year ago, and ditched the vent for good last fall. Speech exploded after he started preschool, now he parrots almost everything he hears. We hope to join the naked tummy club in a few weeks and the naked neck club sometime this summer.:hooray:
02-18-2010, 08:35 PM
I feel this way all the time and then all of a sudden something happens to make timelines seem so inconsequencial. Inchstones seems like such a great term :)
02-18-2010, 09:43 PM
We too have been there - Ayden has always been delayed - everything is at his own pace. At 3 1/2 Ayden finally is able to jump up (not forward) and ride a tricycle.... in all honestly, for Ayden it's just a matter of time and we really haven't been too worried. His last eval through EI/hearing @ just under 3 YO, he ranged from 1Y 11mo to 4+ YO in his various abilities. In talking to the EI, they said those kids are the toughest to assist because you can't just focus them on one area of learning - you have to challenge them in the aspect they excel in.
The extra set of ears were highlighted for us with this hospital stay and the nurse/CA would be too quick to take a temp. With Ayden, you can no longer just take them out, rather we have to tell him that we are taking 1 out to take his temperature. Most of the nurses were fine, but one was looking at me like why would I ask him and of course that time he really wasn't happy and it took more coaxing. :D
We try not to focus on it and just play when we work on the therapy "stuff". :)
02-18-2010, 11:23 PM
I am so glad it is not just me!! I realize they are needed, but at times it seemed ridiculous...he is tube fed why are you asking if he can spoon feed himself - did you read his chart?? kwim?
Anytime you want to share an inchstone...just hop on over and leave it on the blog. The list is growing...and it is quite marvelous how much our kids can accomplish in their own time!
02-19-2010, 02:03 AM
Great to hear your stories. I love your well apt description! I have to say we have been so blessed with our ped. Never have we been handed one of those paphlets. However I do know because of my older son the ones you refer to. They made me stress with him:( Our ped always just casually slips in a question here or there and it is always on par with what she is doing not what she can't do. I do remember feeling that we would never reach a milestone let alone an inchstone (which I love) Andie was in the hospital for 16 and 1/2 months. We brought her home barely sitting independently. Within less then a year of being home she crawled, walked,was potty trained(by two), and could sign over 80 signs. So those were huge jumps that were a head of even some non medical children. We are very lucky. But don't get me started on the eating, or talking. . We are very much inching along. We could not even touch her lips when we took her home. Now she can dip her finger in dressing and then in crumbs and lick it. She can lick a chip until it is soggy. She can swallow ketchup slightly and that is all. We have worked immensly hard for these and when speech says we thought she would be further ahead. How come you are not concerned? Well I am concerned but I can't pour the stuff down her throat so we will take what we get. For we all have worked hard for it! Many times we do get silly questions from speech or OT/PT and I have to shake my head. . But I have gone on long enough.Again this turned out long I guess I like sharing:) Thanks for your sharing.
My little figther
02-19-2010, 08:30 AM
Believe me you are not alone
Here below is an excerpt of a letter that was written by somebody on this board - I can't remember who but it is so appropriate and so very true
" Please medical team, know that I am a unique individual. I am unlike your cases in the text books and unlike the last child you have worked on, I handle what has been dealt to me in different ways than anybody else.I am ME, and I do things that other children do on my own terms and time. Milestone charts mean nothing to me because you see they forgot to make charts for the babies who lost oxygen to their brains, who were intubated so many times that it caused their airway to close up, who laid in a hospital bed no being able to move for numerous months of ther life. My milestone chart will be the one that is not right for most but will be right for me. Please keep this in mind!!!
I hope this helps
02-19-2010, 07:41 PM
I tried to post with my Google or Blogger act. but it looks like it might register as annonymous - I shared Robin's success at eating the bottom crust of a pizza today (about 2") plus the toppings.....big achievement since he cannot usually manage bread type products.
02-20-2010, 07:14 PM
i just started reading your blog janis. and i so love the "inchstones" term. we do have lots of those too...
i am actually kinda feeling low the past days...i found time to do facebook often these days and i tried catching up with how my friends and their families are now. and i've been reading lots of success stories about their children (with their milestones). and i just couldn't avoid feeling sad for hannah. :(
but God has His way of cheering me up. He directed me to your blog. it's a relief knowing we are not alone. and that we are still normal. and now i get inspired of writing hannah's inchstones! :D
thank you janis. and yeah, keep on venting!:D
02-20-2010, 08:24 PM
Sometimes I feel like everyone is just pushing Addisyn so hard to do things. I know crawling is important, but she just doesn't want to be on her knees. She has been delayed and now I am used to that. I know she will do things when she does them. I was ecstatic when she went from sitting to belly.
The ped doesn't push it. If I ask for an eval, she will order one. She goes through the milestone list as it is part of their computerized charts. Both her and I know Addisyn is Addisyn.
02-21-2010, 11:28 PM
Inchstones is a great term. At 5, Ciara is just starting to bloom. I'm actually afraid to say it because she has had so many false starts. Luckily we have been blessed with patient doctors. Boo is 6 1/2 and I believe we will see him really change once he gets the proper interventions. Either way we cheer for each little advancement. Karen
02-24-2010, 12:35 AM
When we found out Kenlie had DiGeorge syndrome (about 4 days after she was born) they told us she would be a little delayed. They explained, instead of sitting at 6 months it might be 9, instead of walking at 12 months it might be 15.....ha, add to that numerous long hospital stays and complications we couldn't have even imagined and we are much more delayed than first expected! Kenlie is 14 months old and can not sit up on her own yet. But, she has come soo far since being discharged in Sept. When she came home she would not pick up toys, she would only hold them if you put them in her hand, she didn't roll, and barely held her head up on her own. Now she rolls around everywhere! Grabs anything in her site and puts it straight to her mouth, which is another huge "inchstone" she use to hate anything in her mouth! She transfers toys from hand to hand and she is learning to sit up, she can stay by herself for about a minute before she starts falling over. So even though she is behind she has come so far in a short amount of time and I am extremely proud of her "inchstones" and can't wait to see what she does next!
I kept all those handouts from Kaisons well baby visits, I read them front to back to see if he was "on track". I have since realized that it doesn't matter, Kenlie is on track for her and thats all that matters!:)
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