One Year Checkup

Joey and I just got back from his one year check up with his pediatrician. Things are looking great! He's 18 pounds, 3 ounces and is 28 inches tall! He also got 3 vaccinations which he wasn't too happy about getting. Dr. B was thrilled with how well Joey is doing.

Did I mention he's starting to stand?! He can't pull to stand yet, but if you stand him up next to the couch, he's holding himself up for about 30 seconds at a time. Joey's PT about had a heart attack today when she was working on his standing. He also wants to crawl so bad, but instead of pushing off with his knees, he tries to use his foot and falls back down. He'll get it soon enough!!

I've had a darn cold the past couple days and it's driving me crazy. Whenever I think it's getting better, I start feeling like crap again. It just stinks since I'm pregnant, I can't really take anything besides Tylenol and benadryl to feel better. I can't even take a nice, hot bath (lord, what I would pay right now to soak in a nice hot bath!)

Also, I forgot last week that I promised pictures of Joey in his new bath seat. He absolutely loves the thing! I think he'd stay in the bath for a hour if we'd let him!!

Mr. Attitude

Last week I started giving Joey stage 3 fruits and veggies and the other day I gave him stage 3 meat for the first time. The first couple bites he gagged on a little, then after that he actually did really good. So yesterday, Joey's OT wanted to watch him eat and was very happy with how he was chewing and swallowing the stage 3 meat. I had bought some biter biscuits and meltable puffs at the store last week so she wanted to see how he reacted to them. To put it mildly, he doesn't like them at all. We put a puff on his tongue and he got sooooo mad and started screaming! So, after it melted and he swallowed it, he went back to being happy so we tried giving him a biter biscuit. He liked playing with it, but the second it touched his tongue, no way! Started screaming again. Joey's OT warned me it might take multiple tries to get him to eat more solid food, but I didn't think he would react the way he did. My little Mr. Attitude.



This morning, he once again wasn't in the best of moods. He would play for a little while, get mad and would start crying. I'm guessing either his teeth are bothering him or he has a tummy ache. So, I just gave him prunes in case he's constipated again and Tylenol in case it's his teeth. Either way, it'll help him out in the long run. Right now he's crying to sleep in his crib and I'm patiently waiting for him to fall asleep so I can take a nap too! It's only 10 am, and I already need a nap!

I hope after his nap, Mr. Attitude has gone for a vacation and my Mr. Happy Joey is back!

Wiggles & DS clinic note

Well, The Wiggles were on The View today, I usually don't even watch The View but Joey's PT & OT were both here and they saw The Wiggles so I turned it up for Joey. Up until now I've refused to watch anything like that. No Wiggles, no Barney, no nothing. The only children's thing I've let Joey watch is his Baby Einstein DVD. Well, even at 10 months old, The Wiggles caught Joey's attention. Joey seemed to like listening to them. So we've been sucked into The Wiggles craze!

His PT & OT usually don't come to the house together but every couple months they like to just to "compare notes" and to give eachother ideas. They both can't believe the progress Joey is making each time they see him!

I just got the Dr's note from Joey's trip to the DS clinic from a few weeks ago. I can't believe how much this doctor went into detail! The note is wonderful! He said "his length is 68 cm, 3rd centile; weight 7.8 kg, 3rd centile; head circumference 44.5 cm, 10-25th centile. On the Down syndrome growth chart, his length is at the 25th to 50th, weight 50th and head circumference 90th centiles". I have DS growth charts, but I have no clue what the heck I'm looking at!

Why can't they explain that in English to where I could understand?

He also said that Joey should have a pediatric opththalmology evaluation done within the next month to see if there is indeed a modest left esotropia (WebMD & google here I come!). On that note, I'm off to the DownSyn forum to post this to see if anyone can explain growth charts to me! Or if any of you could help, please do!

The Lord works in mysterious ways

The Lord definetly works in mysterous ways... I was so upset yesterday about our car breaking down, and not being able to afford heating oil along with our regular bills. Well, today Pat recieved a hoilday bonus. It's enough toget the car fixed and pay for part of a tank of heating oil. Which I just called and it's $2.39 a gallon! Ouch! Well, at least we're going to have some extra money to help us!

In other news, Joey had a visit today from his physical therapist and his speech therapist, both is which went excellent! Joey worked very hard with his PT is reaching while sitting, attempting to stand and trying to get to the crawling position. He still has a long way to go with the standing and crawling, but he's getting so good with his sitting and reaching! His SLP was very happy with his speech progress. She said he's making all the sounds any infant should be making. She also said his eating his going great!

My parents are on their way to Connecticut from Ohio right now. They're somewhere in Pennsylvania and I'm going crazy! It's not been that long since I've seen my mom but I haven't seen my dad since October! I can't wait to have both of our families together for Christmas!

Also, I finally got my copies of Gifts! I don't care that they have flaws on them, I just wanted a couple copies of them to share with my family! yay!

Sitting!

Joey is sitting! Well, only for like 30 seconds at a time, but he's sitting! Before he would fall over instantly or bend in half, but now he can hold himself up! Yesterday he sat for about 2 minutes before he fell over! His OT about had a heart attack today when she saw how good he was doing today! I love days like this!

Convention 2006

Yesterday was the CDSC's annual convention and it was a blast! Not only did we learn a lot more but we got to meet Chris Burke. His band performed and it was awesome! They actually had my mother in law dancing along to their music. We went to three different workshops.

The first workshop we all went to was on Oral Motor Therapy and its importance to speech production and clarity. I didn't realize that when I signed us all up for it, that it was Lori Overland's assistant so we pretty much got a repeat of when we went to see her a couple weeks ago. But it was still useful information.

The second workshop we all went to was on Otolaryngology (ENT) issues in children with down syndrome. We got so much more information on what to expect from Joey's upcoming procedure with his ears. The doctor who was there speaking agreed with our doctor about getting Joey's ears done now and also gave us some more advice. Like, did you know that instead of using Q-tips to clean out ears that it's better to use a dropper and put one or two drops of baby or mineral oil into someones ear to clean out the wax? I had no clue!

The third workshop my mother in law and I went to was on Medical Issues in Children and Infants With Down Syndrome. This was was also very informative. The doctor gave us more advice on Joey's problems with his constipation. While we went to that workshop, Patrick and my father in law went to a workshop on a due process primer. Since Patrick is an attorney, he wanted to hear what the other attorneys had to say about IDEA and other laws pertaining to children with disabilities.

Unfortunately, our forth workshop was canceled due to a death in the speakers family, it was suppose to be on Early Elementary Language. But we were all so tired, that we just decided to cut the day early and go home. We had been there since 8am and by that time it was 3:00.

Also, the keynote speaker, Steve Riggio gave a great talk about his daughter and their struggles with inclusion and other everyday difficulties. But I still think the highlight of my day was meeting Chris Burke!

I'm not sure if I've ever posted much on signing, but I took American Sign Language in college for 3 years. I never finished my degree in Interpreting, but I did recieve a certification in Manual Communications.

I've been signing with Joey, but I can't teach the rest of our family myself. It's too hard to teach everyone. Not to mention, I need some refreshers here and there. I keep reading about everyone and how much they love the Signing Time DVDs.Does anyone know where I can buy some of the Baby Signing Time DVDs besides EBay or their home page? They're so expensive on both of those places and we just can't afford to spend that kind of money right now. Let me know if anyone has any ideas!

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!

Joey's PT came over today to go over the evaluation she did last week. Joey fits into the 4-6 month percentile except for his upper body strength. So, they're adding on physical therapy once a week, occupational therapy once every other week, speech therapy once every other month, a teacher once a month and a nutritionist every couple months. I can't complain about all that! The more help, the better.

It was also suggested today that I take Joey in for a GI evaluation. He's been having issues with constipation. Even with all the prune juice and fruit, he's having difficulties going. I feel so bad for him, he has to push so much and cries the whole time, the barely anything comes out. I never thought I would be so obsessed about someone's BM's!!

Today, I got an email from a parent here in Connecticut that was doing a google search on Bumbo Seats and came across my blog. What a small world!! So a quick hello out to Holly!!

During Joey's therapy evaluation today, I started wondering, "what is normal for a baby?" I know Joey, like many other babies with Down Syndrome are a little more behind than a so called "normal baby" in some areas like strength. But I have no clue what truly is normal. My brother was 16 when I was born so I pretty much grew up an only child and since I have no nieces or nephews to compare Joey to, I have no clue when certain milestones are usually met. When I asked my mom or mother in law, they both said that it's been so long that they can't remember.

For every two steps Joey takes forward, he's been taking one back. A couple examples, a couple weeks ago he started saying "mum" and calling out for me when I would leave the room. It seems like once he started rolling over from his back to his belly, he stopped saying "mum". And now that he can roll from his back to his belly, he can no longer roll from his belly to his back. He gets stuck and starts crying. Luckily after Joey's evauluation today, his PT decided to start doing PT with him every week rather than twice a month.

Somedays, I sit and wonder, "what is normal?", and "is there such thing as a normal child?". But then, if God made all of our children the same, the world would be one boring place!

I can tell you this though...I am so grateful to have this community of fellow bloggers who know how I feel and to get advice from. It's helped me so much just knowing that I'm not the only one out there. But you know, I wouldn't have Joey any other way. He's the best little baby in the world, extra chromosomes and all!!

Wow, I can't believe how busy I've been the past couple days! Yesterday and today, I've been busy making various signs for our Buddy Walk on Saturday and making Joey's shirt for the walk. So many last minute things that need to be done! I thought it wouldn't take me long to make the signs, but trying to make the darn things plus take care of Joey and do household things has worn me out!! Luckily, I'm almost done, just one more sign to make tomorrow, not to mention more house cleaning and Joey's physical therapy.

Monday, after Joey's TV debut, I took him for his 6 month check up with his pediatrican. Of corse he got 3 shots and screamed his little head off afterwards. I still cannot watch him get a shot. My eyes tear up if I see the needle go in. I guess I just feel bad. But Dr. B said Joey is doing wonderful! He's up to 14 lbs, 9 oz!! He's turning into a little pig! And he's grown 1 3/8 inch in the past 2 months!!!

Tomorrow Joey's physical therapist is doing his 6 month evaluation and more therapy will be added since he's getting older. I can't give enough praise for his PT, Michelle. She is such a wonderful person and she truely seems to care about Joey.

A week from tomorrow, Patrick and I take Joey for the mold for his helmet to be made. I am not looking forward to this, we have to hold him still for 10 minutes while the plaster hardens. Thank goodness Patrick was able to get the afternoon off to go along with us so I wouldn't have to do it alone.

Yesterday, Joey's speech therapist decided that we should go ahead and try Joey on another food besides cereal so we tried bananas. He loved them! His smile got bigger with every single bite! I don't think I have ever seen him so happy before. Today, applesauce!

I can't believe how hot it is today! The news said it was 85 degrees at 7:30 this morning. I'm so glad that we have air conditioning... where would we be without it?! I thought moving from Ohio to Connecticut would give me a little freedom from the extremely hot summer days, boy, was I wrong!

Joey can't fall asleep on his own during the day. I lay him down in his crib for a nap and he screams his head off so I try rocking him, patting his back, feeding him and it rarely works. He gets so tired, he can barely keep his eyes open and starts crying. Finally when he falls asleep, I put him down and he wakes up 5 minutes later. The only way I can get him to stay asleep is if I lay him on my chest, which doesn't give me a break during the day to get stuff done. Does anyone have any suggestions or advice?