I took Robinson to our pediatrician to discuss the developmental appt. She said that she had received their report and quite frankly thought it was crap. She said she didn't feel like they got a good evaluation at all and she said she also feels that it is impossible to evaluate a child in all 3 areas (OT, PT and Speech) in the span of 30 minutes in an unfamiliar environment for the child. She referred us to Ki.ds Kou.nt which is a therapy group close to our house. Dr. L said she would like him evaluated in all 3 areas. She doesn't believe he's behind in gross or fine motor skills, but she still would like to see what level he is testing. She does believe that he is delayed in Speech. She said boys are interesting. A lot of them are just late talkers, but with Robinson being a preemie, she would feel more comfortable that we go ahead and start therapy and try to encourage his communication skills. I totally agree with her recommendation.
We have the OT eval scheduled for June 17th (yes, these things take time and there is a waiting list!). I'm waiting for the Speech and Physical therapist to call me back and hopefully we will have eval dates scheduled with him soon. I love our pediatrician and I really trust her opinion. Hopefully we can get him started with Speech Therapy soon- although, I can't wait to see what he actually comes up with when he starts talking.
Other stats for 22 months: I used on online chart to get percentiles so this is an estimated percentile by me. We will have a more definitive percentile in July at his 2 yr appt.
Height - 35.5 inches- 85th-90th percentile for his Actual Age
Weight - 27.5lbs - between 40th-50th percentile for Actual Age
Head - 48 cm - around the 40th percentile for Actual Age
Now for a video- this is typical Robinson, climbing all over the couch. He is really into Diego right now, so it's pretty cute to hear him try to say "Go Diego Go"...the 'where is your nose' game is still apparently quite boring to Robinson b/c he refuses to play!
Go Diego Go
Thursday, May 27, 2010
Tuesday, May 25, 2010
Pool Fun
Summer time brings lots of sunshine, HEAT, and fun times in the pool!
In the pool with Daddy
Is it cold, Daddy?!
Such a handsome boy
My 2 handsome boys!
Hope everyone is having a great start to their summer vacation!!
Friday, May 21, 2010
My Other Family
As many of you are probably aware, especially if you found me via Blogg.er, the online community is really becoming the popular way to meet, whether it is dating, friends or playgroups.
I'll be the first to admit that I was very hesitant about 'meeting' people online. I guess you could say that I saw one too many Date.lines on tv that warned of killers and such. And yes, you still have to be very careful and very aware of what you post on the internet. It's not all rainbows, but from time to time you do find the pot of gold at the end of said rainbow.
My pot of gold was a group of women that all had preemies themselves. I found them on a message board while Robinson was in the NICU. For the longest time, I just lurked, as they call it. Just read other people's stories and soaked in all of their knowledge of the NICU, what we might face and I really held on to all of the success stories. It gave me hope that we would be okay.
Eventually, I started posting as well, slowly introducing myself. I got to know a core group of them pretty well, and am now part of a private message board with them. This is a safer place where we can share our blog address and/or pictures and it's password protected so that you feel more isolated from the big brother internet ;)
These women are not just mothers of preemies. I consider them my friends. They understand the struggle of having a premature child and losing out on a full, happy pregnancy. They understand the fear that wells up in your throat when you hear your child cough, because you know a cold is coming. To most parents, a cold is nothing out of the ordinary. To preemie parents, it's like a dark cloud that continuously hovers around ready to strike at any moment. They understand my fear; they share my anxiety. It's a bond that I don't think I could ever portray in words to make you fully comprehend.
One of the mothers lost her little boy yesterday. It was just a chest cold, some would say, but as a preemie mom, nothing is ever just a chest cold. A chest cold turned into low oxygen saturations and an admit to the hospital and his little lungs just never could recover. He was around 20 months old.
It's not suppose to be like this. When they come home from the NICU, you are supposed to be able to breathe a little easier, laugh a little more. And you do, until you hear that cough and everything can change in an instant. And yes, this particular little boy had been very sick before, and I just think his poor little body couldn't take anymore. It's still unfair. It still goes against nature and everything you hold in your heart. The loss of a child is something that I feel no parent should have to endure. My heart is breaking for this family and it's so hard to wrap my brain around this tragedy. You can't question or ask why, because you'll just become a 'hamster head'. This is a term I recently heard to describe when your mind just goes in circles of worry and wonder and never finding an answer. This kind of heartache is one of life's true mysteries. I know that the Lord has his reasons. But as a flawed human, it's hard to understand what good could possibly come of making a family suffer like this. That is why I can't question and have to hold on to my Faith that there IS a very good reason, because God is not cruel and would not endure seeing His children suffer something so unbearable.
Heaven is truly gaining a little angel. And this sweet little boy is finally in a place where he can run and play without worrying about wheezing or oxygen saturations or ever being sick again. Rest peacefully, sweet, sweet JW...
http://blakeybabies.blogspot.com/
I'll be the first to admit that I was very hesitant about 'meeting' people online. I guess you could say that I saw one too many Date.lines on tv that warned of killers and such. And yes, you still have to be very careful and very aware of what you post on the internet. It's not all rainbows, but from time to time you do find the pot of gold at the end of said rainbow.
My pot of gold was a group of women that all had preemies themselves. I found them on a message board while Robinson was in the NICU. For the longest time, I just lurked, as they call it. Just read other people's stories and soaked in all of their knowledge of the NICU, what we might face and I really held on to all of the success stories. It gave me hope that we would be okay.
Eventually, I started posting as well, slowly introducing myself. I got to know a core group of them pretty well, and am now part of a private message board with them. This is a safer place where we can share our blog address and/or pictures and it's password protected so that you feel more isolated from the big brother internet ;)
These women are not just mothers of preemies. I consider them my friends. They understand the struggle of having a premature child and losing out on a full, happy pregnancy. They understand the fear that wells up in your throat when you hear your child cough, because you know a cold is coming. To most parents, a cold is nothing out of the ordinary. To preemie parents, it's like a dark cloud that continuously hovers around ready to strike at any moment. They understand my fear; they share my anxiety. It's a bond that I don't think I could ever portray in words to make you fully comprehend.
One of the mothers lost her little boy yesterday. It was just a chest cold, some would say, but as a preemie mom, nothing is ever just a chest cold. A chest cold turned into low oxygen saturations and an admit to the hospital and his little lungs just never could recover. He was around 20 months old.
It's not suppose to be like this. When they come home from the NICU, you are supposed to be able to breathe a little easier, laugh a little more. And you do, until you hear that cough and everything can change in an instant. And yes, this particular little boy had been very sick before, and I just think his poor little body couldn't take anymore. It's still unfair. It still goes against nature and everything you hold in your heart. The loss of a child is something that I feel no parent should have to endure. My heart is breaking for this family and it's so hard to wrap my brain around this tragedy. You can't question or ask why, because you'll just become a 'hamster head'. This is a term I recently heard to describe when your mind just goes in circles of worry and wonder and never finding an answer. This kind of heartache is one of life's true mysteries. I know that the Lord has his reasons. But as a flawed human, it's hard to understand what good could possibly come of making a family suffer like this. That is why I can't question and have to hold on to my Faith that there IS a very good reason, because God is not cruel and would not endure seeing His children suffer something so unbearable.
Heaven is truly gaining a little angel. And this sweet little boy is finally in a place where he can run and play without worrying about wheezing or oxygen saturations or ever being sick again. Rest peacefully, sweet, sweet JW...
http://blakeybabies.blogspot.com/
Sunday, May 16, 2010
Summer Fun
I will admit, that I have not been the best blogger. I just can't seem to get excited about it any more. I guess it is a good thing, because it means that Robinson and I are having so much fun being outside and away from the house. When we are in the house, Robinson's favorite indoor activity is to color.
Everything else is pretty good. I had a lot of suggestions on our 'bathroom' situation with Robinson and after trying numerous things, flaxseed seems to be helping the most. I'm still using Miralax every other day or so until we can get things worked out, but there is much less crying and discomfort so that is what I'm happy about and is my goal.
We had Robinson's developmental appointment last week. He's about 28 pounds (they kept his clothes on for some strange reason, so I'm guessing he is between 27 and 28 lbs). It went okay. I don't like that it is a strange place with strange people and to say that their toys are uninteresting is the understatement of the year. Robinson has no problem with puzzles, however, their version is just a red circle. He threw it on the floor- and so they count that as not being able to do puzzles- whatever. The stairs were just big wooden blocks in an exam room. Robinson climbed to the top and jumped off- just like any other child, especially boys, would do. They said he couldn't climb down stairs. For the record, the next day at lunch, he climbed up and down about 20 times all by himself at the restaurant. But again, they don't go off what the parents say, they only see what they see in 40 minutes and think that is an adequate eval. Even with all of this nonsense, he's right at his actual age for almost everything, except expressive speech. They scored him at 10 months- which was extremely frustrating, because he HAS words, but he didn't say a thing while we were in there, so guess what. They scored him at 10 months. Now I know he is further than 10 months. I'd probably put him at about 15 months or so. He has some animal sounds and copies singing notes, etc. and clearly communicates with non verbal language. So, to say I was annoyed with this NICU f/u is a big understatement. We will not be going again. I just see them as pointless and I do not think they get an adequate picture if they only look at the 40 minutes that they see Robinson.
I will be taking Robinson in to see our pediatrician to talk about getting Robinson evaluated by Early Intervention. I trust EI. They come to your house, watch the child in their natural environment and seem to take into consideration parents' opinions and input. Now to be honest, I think Robinson is fine. I think he can talk, but he's lazy and is choosing not to for whatever reason. I trust our pediatrician, though, and if she thinks EI is a good idea, then we'll go with it. Ironically, even though the NICU therapists scored him so low on speech, they didn't suggest therapy ???? that was the other reason I don't really trust their opinion. So, we will go to someone we know and get her advice. Wish us luck!
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