Before and After

I finally got the before and after pictures from when Joey wore his helmet. I can't get over the difference. Some of the pictures you can't see much of a difference, other's more. As much of a pain the helmet was, it was worth it in the end.

Finally!!

Today is finally the day! Joey is done with his helmet!!! And I think he's as happy as I am!

weekend update

Saturday morning, Patrick and I went to test drive the van we've been looking at. It drives like a top! I'm so excited, I just hope this one works out better than the last one we looked at. The guy who is selling it is going to let me take it to our mechanic to look over to make sure there's no major problems hiding under the hood. As long as it checks out ok, I'm going to have a new/ used van!

Saturday afternoon, Joey's Aunt Maureen, and I went and bought Joey a new car seat. He hasn't completely outgrown his infant car seat, but since he's getting his helmet off on Tuesday and they warned us that his car seat that he has would put more pressure on the back of his head and might help his head to regress back to being flat easier. So, after making a trip to BJ's then to Babies R Us, then BACK to BJ's, I chose a car seat that adjusts from 5 lbs, to 80 lbs. And even in the infant setting, his head doesn't seem to have as much pressure on the back of it.

Today was spent going to noon mass then spending the rest of the day cleaning and doing things that I've been wanting to get done. Unfortunately, I ran out of time! There was so much more I could have gotten done today, but hopefully I can get most of the things done this week.

I still can't believe Tuesday is the last day with Joey's helmet! The last 13 weeks have gone by so quick! Tomorrow I'm actually going to let Joey have his helmet off for intervals so he can start getting used to not wearing it. He had it off for about 45 minutes this evening and didn't seem to be too happy to have it off, especially when he hit his head on a toy. It'll take a little adjustment getting used to it being off for good.

Tomorrow I need to go back to Babies R Us. Today Joey used a medium flow nipple on his bottle rather than a slow flow for the first time and did good. No choking, so we're going to try medium flow for now on. Mostly because his slow flows are wearing out and he needs to use the ones more for his age.

I just checked my bloglines and realized that I've not read many of my favorite blogs all weekend and I'm getting too sleepy to read them tonight, so I'll save that for tomorrow morning during Joey's first nap of the day to catch up with all my favorites and try to read a couple new blogs too!

ears, homesick, vans & helmet update!

Patrick and I noticed this morning that Joey didn't seem to be hearing as good as he had been for the past couple weeks since his surgery, so I called his doctor this morning and took him in. Sure enough, his little ear canals were already filling with wax again! So his Doc did as good of a job as he could cleaning them out. And he does actually seem to be hearing a little better now.

Yesterday I was sitting here at the computer and started getting homesick, well I've been homesick, but I was sitting here thinking about it so I decided it was time to plan another trip home. So, I'm flying out the 26th and coming home February 4. It's about time I go home. I haven't been home since October and I miss my family. I just saw my parents, but I really miss my brother, sister in law and my cousin, well I miss everyone! I can't wait!!!

Today I went and looked at another van. The other one we looked at ended up having a leak in the transmission and the guy wasn't willing to pay the full amount to have it fixed so it's his loss. But it's good that we didn't buy that one. It was a 1997 and today the one I looked at was a 2002 and only $1000 more! And come to find out the guy who's selling it is a friend of a friend and is going through a divorce and needs to pay of the loan. So we're going to talk to him in the next couple days. Cross your fingers this one works out!

Less than a week and counting left with Joey's helmet! And I can't wait! Well a broad range of topics talked about tonight but I think I got everyone caught up on the latest!

2 more weeks!

Today was Joey's final helmet adjustment! We go back in 2 weeks for his final molding & graduation. I can't believe how fast the past 13 weeks has gone! And the difference in the shape of his head is amazing! I just hope his head doesn't regress back very much. The therapist there said that sometimes infants with Down syndrome head's regress back more due to how soft their bones can be. I don't know, Joey seems pretty hardheaded to me!

Speaking of Joey's being hardheaded, his little temper is coming out more and more everyday! If he doesn't get what he wants, he lets you know!

Frustration

After reading a post over at Down Syndrome Life about people's reactions to his daughter, it helped to in a sense inspire a post that's been brewing up inside of me. We haven't had the issue of people staring at us until recently when Joey got his helmet. People would be staring even if I didn't paint it so I know that's not why people are staring, they're staring because he's wearing the darn thing. For me, it's going to be worth it for him to have a nice round head and not one with a HUGE flat spot on the back. Not to mention I think it's kinda cute! I wish he wouldn't need to wear it, but since he does, I'm making the most of out it! Anyways, first example of people... our first time out after the helmet was at church. I was holding Joey as we were walking up for communion and I could FEEL the people staring at us. My husband said everyone turned their heads and started whispering to each other. Grrr...

Then, last week I took him to the BJ's Wholesale Store and I literally had 20 people stop me and ask about the helmet. One guy actually had the nerve to say, "so what does he have water on the brain or something", I calmly replied back, "no, my son has down syndrome and his bones are softer and that caused his head to have a flat spot".

I know that people don't always realize that they're staring but geez... it kinda hurts. The older Joey gets, more of his facial features are becoming noticeable and people will be staring at him because he has Down Syndrome. Does anyone have any advice on how to handle people who stare? Besides what my husband does, he glares right back at the people. Some people have great comments about his helmet and how cute I made it, others like the jerk at BJ's have no common sense in what to say to someone. I don't really know where I'm going with this post, but I felt the need to vent/ ramble.

Wow, 5 minutes ago I put Joey in front of the TV and turned on his Baby Einstein DVD and it's still keeping him amused!

Yesterday I took Joey to Norwalk to go see Lori Overland, an Oral Motor Development Specialist who's evaluations usually cost $600 and her sessions $400, but is currently doing a study on babies with Down Syndrome 7 months to 3 years, and we're getting her services for free since Joey is 7 months old! Her study is looking at new ways to feed babies with DS to work on less of a tongue thrust. It involves me massaging his mouth before I feed him food and a certain way to use the spoon. It's going to be extra work but I'm willing to try! I'll be sure to keep you guys updated on how it's going.

Today, I take Joey to get his helmet adjusted for the first time since he got it last week. I really think they need to take a little off the back. When he sleeps in his crib, he can't sleep on his back. His poor little head gets tilted too much so he rolls onto his side in which he then rolls onto his stomach. Once he gets onto his stomach he gets stuck and starts crying, or sleeps with his head face down into the mattress (which is no good!). So they better come up with a solution today. My only free day this week without an appointment for Joey is Friday and I can't wait. Yesterday I had an one hour drive each way and today I have the same.

Well, it's been almost 10 minutes and Joey is still watching his DVD but starting to get a little frustrated. I better go rescue him!

Yesterday we went and picked up Joey's helmet. He doesn't seem to mind it at all except for when his head starts to sweat. That boy gets so grumpy when he gets hot! Anyways, I painted it last night and gave it the theme of Patrick's favorite football team, the New York Giants. I did my best to make it look like a Giant's football helmet.

helmet mold

Well, Joey got the mold made for his helmet. I was allowed to take pictures, so you know me and how much I love photos so here they are! The first two are actually take by Cranio Technologies and the rest are of coarse, by me. He wasn't a very happy camper, I wouldn't have been either, but it'll be worth it in the end.


Pat & I think this looks like a mug shot!

What a way to wake up this morning... to a baby with snot running clear down to his chin! Poor little guy has another cold! At least this time, he's not running a fever. Luckily he seems to feel somewhat ok, he's not miserable like the last one.

Yesterday, my mother in law and I took Joey to Craniotechnologies and he does need a helmet to correct his mis-shaped head. On a scale of 1-10 (10 being the worst), Joey's head is a 7. I never thought his head was that bad. Anyways, he not only has plagiocephaly, he also has brachycephaly. So after it's approved by our insurance (which they Do cover these), we'll go back and get a mold of his head made. This is going to be the worst part of it all. We're going to have to hold Joey still for 10 minutes while they make a plaster mold of his head. Then around a week later we go back to pick it up. Joey will have to wear his helmet for 23 hours a day for approximately 12 weeks, then his head should be better! But THANK GOD insurance covers these things cause they're not $2000 like I thought, they're $3000!!!!!!!

preparing for the buddy walk

I've been slowing getting things together for our Buddy Walk on September 30. We've got our t-shirts and personalized buttons with our pictures with Joey. We've already made it to our goal of $500 and the money is stil coming in! Since this is our first year in the buddy walk, I didn't want to set our goal too high. But we made it! I'm so excited... I guess didn't expect people to be so generous, but they have been and I really appreciate it.


This is the picture we decided to go with on our t-shirts for Team Heeran.


Tommorow, Joey and I have an appointment to go to Craniotechnologies for a consultation for Joey to get a helmet. Unfortunatly, Joey's head never rounded out and has plagiocephaly even with all the belly time and using blanket rolls to have him lay on his other side rather than the flat side. Poor little guy's back right half of his head is rather oddly shaped. Our insurance says they cover a helmet, or else I'm not sure if we can afford it, they're close to $2000. Wish us luck!!!!