Since that title worked for my friend in getting my attention this week, I decided to try it out on you! I’ll get right to the point and then backtrack with the details.
Know what these pictures are???? It’s Ty taking steps!!!! On Friday, September 19th, 2005 – Ty Jordan Brinkman took 5 to 6 steps consistently!!!!!!!! We were at Zandi’s second birthday party and Hanna (a cousin) was having Ty take steps towards Jamie. When everyone started squeeling I look over and Ty was WALKING!!! He has been taking 1 to 2 steps between furniture for over a month now but had never taken so many steps and certainely not with repeated attempts. It was like he was so proud of himself he couldn’t wait to try it again.
Last week I was going to write out a long sob story on this issue. There were several contributing factors. First, I had seen two of Ty’s NICU buddies and both were much farther on their gross motor skills than Ty. Second, I finally got Ty into an OT (share about that in a bit) and she suspected Ty’s walking issue was a “brain thing” and possibly a gravitational sensory issue (which I agree may very well be the case). Third, I watched my little Graham (11 months) take his first steps and go from a sitting position to a balanced stand on his own in the middle of the room. Before I could stop the tears they were just streaming down my face. It wasn’t because I didn’t want Graham to stand or walk – it was because in that moment I was staring in the face of the reality that Ty was way behind in his motor skills and I was loosing hope of him catching up anytime soon. I emailed Heidi the next morning and asked her to pray for me because I had been feeling very emotional about the whole issue. Heidi wrote back and asked me when God ever did anything in MY time and asked why was I surprised by this delay. I had a good laugh about that. Good medicine and completely true.
When I watched Ty walking over and over between Hanna and I though I was truly overwhelmed. MY former 25 weeker, the child with the bilateral brain hemorrages and pulmonary hemorrage and PDA and esotropia, and hernia’s and sensory issues, and feeding issues and periventricular leukamalacia, and reflux and severe apnea and on and on and on….is beating the odds…BY THE GRACE OF GOD. I know that so many of you have been praying for Ty for the last 19 months and I am sure this news will bless your heart too. If you have high speed internet, take a minute to watch the miracle of it HERE – amazing that I can cry watching a one minute video! I love the way he has to put his hands high in the air to keep his balance – so precious.
In addition to the big news above, Ty also managed to climb on the couch this week and my bed which by the way is very high (31 inches tall). He was darn close to escaping from the playpen as well. What am I going to do????? Jim and I are most concerned about the couch. We can close the bedroom door to keep him off the bed but we can’t block him from the couch. Falling off the couch would be bad enough but the bigger problem is that I have an open wall behind the couch and if he can climb up the couch he can climp up and sit on the wall. If he fell from the wall (which is probably about 3 and a half feet tall) onto the wood laminate floor – he could be badly injured (obviously). Ty has a very high pain tolerance and will throw himself off anything backwards without a second thought. We have been discussing putting up a trellis with vines just to block the wall opening for awhile. I think I am going to be saying “THAT KID!!!” for quite some time !
I finally found an OT and Ty was evaluated a week ago. He did very well on the eval but it is still apparent that he could use some fine motor help. We discussed the possibility of Ty having sensory issues (very common for micros) and I think I see at least mild sensory issues in the following areas:
(a) Very sensitive to sound – the slightest sound out of norm will distract him from a task
(b) Sensitive to food textures – he hates eggs because of this and he is very skeptical each time he tries a new food – not over taste but over texture. He also prefers cold to hot.
(c) Aversion to animated characters. Remember the glo-worm? Well we have been noticining that Ty doesn’t like anything that is animated with lights and music if it has a face. He has a talking Elmo that he does not like and when we go down the toy isle in stores he averts his head away from the talking dolls/animals if we start playing them. The worst incident happened last week. If you think the glo-worm fear was tragic, be glad you didn’t see this one! Tanner has a remote T-Rex and it has been boxed for awhile. Recently Tanner decided to play with this toy. The T-Rex walks, makes mean scary dino sounds, and his eyes light up. Ty saw this and went into hysterics. He was so upset I thought he was hurt. When Jodi and I went in to check on him he was burying his face into the carpet and wouldn’t look up. Surely he can’t be this upset over Tanner’s T-Rex? So of course I had to test it. Sure enough – each time that T-Rex was turned on Ty flipped out screaming. The globaby seemed to make Ty sad but the T-Rex made him very very scared. In fact, as long as that T-Rex was in the room (even turned off), Ty would crawl by the playroom door and avert his head. He would not even LOOK in the room much less go in there until we boxed the T-Rex back up. Maybe this is just a strange kid thing but due to other sensory related things, I am wondering if this could be something of that nature….? Hmmmm…..
(d) Ty likes his baby swing but he doens’t like any other swing. The OT tried 2 different swings and his PT and I tried swinging him in a blanket and he hated all 3 things. Makes us wonder if he is gravitationally sensitive. If that is the case, that would explain why he will probably walk before he stands. He can stand supported but he still cannot stand for more than 5 to 6 seconds on his own (and even that has only happened a handful of times). I have heard of other micros that struggled with balance issues so I am starting to suspect this.
We have to travel about 30 minutes one way to his OT but it is a nice drive (north to city of Cavecreek). He should start this therapy once a week within the next couple of weeks. This brings us too……
I am debating when I want to start this. For right now I am doing baby sign with Ty. My friend Laura really encouraged me to get more consistent with my training. She made great progress with Ty in one hour one day and I realized that he was far more likely to sign than talk right now. This week he learned the sign for “more” and “please” and can use them appropriately. I am going to work on a sign for “drink” next. I don’t want to teach the sign for “thank you” right now because he likes to blow kisses and it is a similar sign and I don’t want to add confusion at the moment. He is getting to that point where he is very frustrated when you don’t understand what he wants. He understands language very very well so we are trying to give him better tools to communicate back with us. This week he has starting saying “Ya Ya Ya” when you do what he wants though:).
It has begun…the “I just want my mommy (or daddy)” stage. Ty used to go to everyone but he is now deciding to be more cautious and he prefers mom and dad. At church this morning I noticed him turning away from several people giving the non verbal communication of “please don’t try to hold me”. All very normal and part of the growing up process just seems funny to me that both my kids started this at 18 months instead of the typical younger ages. Tanner never did grow out of it but he is more shy and reserved by nature. I suspect this stage will be short for Ty.
All in all…a VERY good week