Friday, July 26, 2013

14 months and 3 months home!

Sorry about the long time between posts. I'm sure it would be pointless to tell you all that we've been quite busy,but there is a reason why I don't hop on and update as much as I like.

Summer hasn't been quite as fun as normal,but we are trying to tick off as many specialists as we can,and get into a good routine so that when Fall comes around and activities start back up,it won't be quite as hectic.

So far we've seen the ophthalmologist and Pacey's eyes are great. We won't see them again until he's 3 or so. We've also seen the cardiologist and we won't see them ever,because P has a perfect heart. Now,THAT is a huge relief. We are working with an ENT doctor and having monthly hearing tests to make sure that the fluid is his ears aren't causing any hearing loss. We originally went to an audiologist,and she said that Pacey had hearing loss. Well,when she was doing the test,she kept calling his name. At this point,he had only been home for about 6 weeks,and he wasn't really responding to it. I told the lady to make noises and he would respond,but she was less than helpful. When we went to the ENT,he was doing a much better job of responding to name and noise,and he passed with flying colors. Children with DS have notoriously small ear canals,so we have to be extra careful about the canals and keeping them clear so that he can hear well. The only specialist we have to continue to see is the gastro doctor. He deals with the reflux issues. We first tried out Zantac,but that was a joke,and the vomiting didn't decrease at all. So,they are trying us on Prilosec...which is helping,but we still have spit up every single day. However,it's the only real MEDICAL issue that we have,so I'm not complaining about that.

We are also seeing a Speech,Physical and Occupational therapist once a week,and the state Early Intervention program comes twice a month. OK,confession. They aren't that helpful- any of them. But,we take what help we can get. I keep Pacey on a pretty aggressive program of my own,and when we go to therapy,I find that I'm sitting there thinking....this is pointless. Fir instance,speech therapy is mostly where Pacey sits in a little highchair and the ST rolls cars in front of him and says vroom,vroom. Then,she brings out bubbles and blows them while she says pop,pop. I's silly. I don't want to ever feel like I didn't do enough,though.

When it comes to gross motor skills,Pacey does very well. He is hands and knees crawling like a pro,and we goal to have him crawl 1/4th mile a day,which is roughly 35 times around this little track I made through the house. I don't have him do it all at once,we break it up,but crawling is good for the brain,so it's a must. I am also trying to add more fine motor skills to our day,because he was really lacking in that area. We play with blocks,and work on putting them in the bucket,take them out,pass them back and forth between hands. He thinks its torture because I won't let him throw the toys. ;)

Also,we have been working really hard on oral skills. He is now drinking from a straw,which wasn't too hard to teach. It's good for the oral muscles to be able to suck from a straw,and since he just turned 14 months,I was ready to take him off the bottle during the day. I am still doing one at night to help strengthen the bonding. Juice boxes were a big help in getting the straw going. And,here's some interesting information for those adopting a child with DS. They don't know how to chew,or learn how to chew like neurotypical kids. It's so strange. I was just feeding Pacey food thinking he was doing fine when the ST told me that he was actually "munching" which is what it's called when you chew with your front teeth. DOH! I didn't even realize. So,I've had to start working really hard with getting his jaw to chew the food. He can,but I have to hold my finger in the back of his mouth to facilitate the chewing. The problem is that DS children have low muscle tone,and it usually causes the tongue to be very weak to move the food to the back of the mouth. I do not want him to chew with his front teeth,so I'm working on it,but I have a feeling that I will be sitting with my finger in his mouth for a loooooooooooooong time.

Gosh,looking back over this update,it doesn't seem very interesting.

Here's what you really want to know. Is Pacey doing better? Well,yes and no. I did notice a big shift in attachment between months 2 and 3. He seems to understand that I am his momma,and I will meet his needs. He does calm quickly when I hold him,and he will crawl to me over other people. We still "cocoon" him quite a bit,and do not let other people hold him. Sometimes people with DS can be overly affectionate with strangers,and we don't want to start that. A lot of people ask to hold him,but I just politely decline and it has gone well so far. He doesn't reach for people standing close by anymore,and he doesn't go up to strangers. If we go to story time at the library,he will sit on the floor near me,and won't wander. Also,the stimming is so much better. Now,you will hear 2 schools of thoughts on this,but we are in the camp that we must stop stimming,no matter what. It's not appropriate or helpful,so we make him stop. I've had to get creative,but we have seen a huge improvement. The only things we still deal with is hair pulling (his own) and thumb biting. The rocking,head shaking,and teeth grinding have stopped (mostly-very occasionally he will revert).

On the other hand....Pacey is very intense. I describe him as being a house on fire,and I'm just trying to contain the fire. It's still really hard,and let me be honest,there are times when I HAVE to walk away...sometimes outside. It is hard,hard,hard. I get so down on myself sometimes,because he is just a baby,and I am the adult,but I want to just lay in the floor and cry sometimes LOL. I also feel sorry for the girls sometimes because they are so good with him,but sometimes I think we all just want a break.....from the screaming and mania that surrounds him at times.

I still maintain that we are just taking things one day at a time,and we don't think beyond that.

PS- Sorry that I don't have new picture. My laptop is being repaired right now,so I'm using Eriks!

1 comment:

Anonymous said...

Thank you for such an honest view from the adoption front. I have been following your blog for about a year and a half (I am an internet "friend" of Renee Garcia) and truly appreciate that you share both your joys and your struggles.
I don't know if I've ever heard anyone sound so determined in a blog before! :). Pacey (and your girls too, of course) is truly blessed to have you as his Momma.
Lori in Canada