View Full Version : Bad day
08-09-2006, 11:05 AM
I dont even know where to start, First, I am not comparing BUT will someone please help.......Joseph is 17mths now and still no one seems to be concerened that he is STILL 21lbs,,,,is that ok???Second,,,he is still not crawling or walking he want s to go but wont....Third, will someone please tell me these are all delays because of the trach, I cant take it anymore, on top of all my questions Joseph was also diagnosed with trisomy 16 but after his 10mth evaluation the genetics said "this seldom happens but we do not need to see Joseph again", of coarse we were thrilled because we understood how broad trisomies could be, but how am I suppose to seperate the trach delays verse what if Joe really does have trisomy16 delays.....I can not accept what I cant see...all I am doing today is crying,,,,then to boot they cancelled Joes feeding evaluation Mon., that evaluation was more important to me than any tests he's had....I am obsessed with the whole weight thing. He gets bronch Sept.11 and if he does well the following week we go for the trial decan......SO can someone reasure me about the 17mths and 21lbs and the not crawling yet!!!!!Or do I have something else to worry about????Thanks for your time, Lisa @ Joe http://www.tracheostomy.com/iB_html/non-cgi/emoticons/sad.gif
08-09-2006, 11:17 AM
Joe with his dad at Cpe May over the weekend,,,it was a good time
08-09-2006, 11:46 AM
I read your other post first, now I get why you are having a bad day and who can blame you. Not knowing can drive you crazy..... We saw so many genetic people and no one came up with much but that was perhaps the scariest of all for me anyway.
Aaron too is little...so I know how you feel, I obsess over weight! I try to chalk it up to reflux (devil), trach and being a preemie. He is still so young......I would like to think he will still catch up. He is so stinking cute!!!!
Hang in there!!!! Let me know when is a good time to call!!!
08-09-2006, 12:34 PM
I haven't much to add except all kids are different and they all do things at their own pace, Joseph's standing, right? Sam could not roll over until he was about 16 months old, though he could sit up and crawl. I think Val is right, just let Joseph do things at his own pace - he will get there. but in the meantime, I would ask to see the geneticist again, just to put your mind at rest. Incidentally, Sam is 3 1/2 and only 30lbs, he has hardly gained any weight this year.
http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif Hope your day gets better
08-09-2006, 08:08 PM
I know how frustrating it can be. My two closest friends have "normal" healthy children and it is hard not to compare Will and what he does with those two. Will just does things at his own pace, he basically does what he wants, when he wants, I think it is the preemie attitude. We just take things day by day and really celebrate the small steps. Don't worry, I think he will catch up sometime, it just may not be tomarrow. I know it is hard not to have answers to the important questions you have. Will is 16 months and is only 17lbs, so if it makes you feel any better, Joseph is kicking Will's little booty in that department. I hope you have a better day tomarrow. By the way, I have a coworker that has a 9 month old set of twins, the girl is crawling everywhere, and the boy is not even able to roll over, I think it just depends on the kid
08-09-2006, 08:51 PM
He looks healthy in his photo with is dad. Some kids just grow a little slow and some grow like weeds trach or no trach. I know what you mean that not knowing does drive you crazy.
08-09-2006, 09:34 PM
First of all...big http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif . Sometimes you just need a good http://www.tracheostomy.com/iB_html/non-cgi/emoticons/tears.gif
I think Val's response is right on. Waiting this out is so hard, but all you can do is continue to encourage him and cheer him on.
A little about my girls...both were preemies, Bree was 24 wks and Hannah was 25 wks. Started out at 1 lb 13 oz and 1 lb 12 oz. Bree is now 8 1/2 years old and JUST broke 50 lbs. She is very petite. I think at 18 months she was still under 20 lbs. Bree had nowhere near the issues that Hannah has, but she just didn't want to gain weight. When Bree was 3 (Hannah's age now), she still wasn't even 30 lbs, thinking back Bree was probably about 25 lbs. Hannah is right at 30 lbs. Kids are just different. Looking at numbers, Hannah should have been the one with the weight issues considering her issues. But overall, they are both healthy and happy and moving along. That's what's important...improvement.
I think he looks great in the picture! You are doing a fantastic job with him. You've had a stressful day...have a http://www.tracheostomy.com/iB_html/non-cgi/emoticons/cheers.gif and maybe tomorrow will bring a new perspective.
madelyn and rynns mom
08-09-2006, 10:27 PM
Maddy and Rynn are now 5 years and 1 month old. Maddy weighs 39lbs. (chubba bubba)and Rynn weighs 34lbs.(skinny mini). They are small compared to other kids their age, but they are still on the charts at least!! At 18 months old I believe they were just hitting the 18lb. range, and our docs were not worried at all. They said as long as they keep on an upward curve that was good!! If they hit a plateau they just increased their feeds a little!! So I wouldn't worry to much about it. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif
Love Kris http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif
Hi Lisa and Joe,
I could feel your desperation as I read your post and then thankfully Val responded first. Val, you have a way of tamping down those out-of-control feelings and putting a reality spin on them. We all need to hear it at times and today Lisa and Joe really needed to hear it. You're wise beyond your years. I have nothing constructive to add, just listen to Val!
BTW - I LOVE, LOVE, LOVE Cape May. Haven't been there in a few years but we'll definitely go back. Hope you got to see Sunset Beach. In spite of the touristy stuff, it really is beautiful.
Good luck and enjoy watching Aaron grow!
08-10-2006, 03:38 PM
I wouldnt worry about the weight. Lets see Ella and Emma are 21 months old and Ella is only 23 lbs or so. Some kids are just tiny
08-10-2006, 07:15 PM
All of the postings are good advice forsure, so i wont go into detail again, but i will tell you that my grandaughter is 2 and half and she has been 23 lbs for the last 3 months, we just found this out the other day, so me being the paranoid grammy first thought was is there something wrong that we could be missing, maybe some illness and so on, but this toddler doesnt stay in one place longer than a few seconds, she goes and goes and goes, she did grow a half of an inch, so that was good. the nutitionist increased her feed by 10 cc in each feed thats it, i was rather surprised myself, i thought we would be on polycose( fattening calorie booster) bu they said no, they will watch her weight closely and see what happens over the next few months, we will consult with the peds, and see. Also were is your little one on the growth charts? how long an so on, because if he is on the chart then that could be why no one is alarming, i can tell you they didnt seem to alarmed by my grandaughter not gaining weight for 3 months.I really thought she gained but they said no, but she sure feels heavier to me. i think alot of theory is if your not loosing its ok. hope this helps.
08-10-2006, 07:24 PM
Hugs sweetie! I think when we are so consumed with "medical" stuff we look forward to seeing the milestones and when they don't happen in the time frame we think they should the inner dialog with ourselves is a killer.
My one daughter is not trached but was on O2 24/7 until recently. The kids will be three in a couple of months and she only weighs in just under 23lbs. No one is really concerned, but her pulmonary says she would like to see a bit more weight on her.
Know her brother is a line backer! Over 30 lbs and a whole head taller then the girls. Every kid is just different.
It's weird but I have watched it happen several times with my kids that suddenly a light just seems to come on and they are doing things I didn't think they would do just a week before.
Hang in there! And the picture with dad is beautiful!
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