henry's mommie

New site

2010-05-21T19:44:00.004-05:00

hello everyone, just wanted to let you know that this site (henry's mommie) will no longer be in use.

my new site is http://mylittlecheekymonkeys.blogspot.com/.

i hope you will add the site onto your lists and continue to follow us!!! the next couple weeks i will be setting up my new site. thanks so much for following the past couple years. i can't believe it has been that long.

dental visit and proper language (edited, added info)

2010-05-20T09:34:00.006-05:00

no i'm not talking about abc's show last night. although i did watch the part about the grocery clerk with down syndrome. i was glad to see people who didn't have a connection to ds stand up for the guy. i wondered what i would have done if i hadn't had henry. i would like to think i would have said something. i think i would have said something if anyone was treating anyone, regardless of having a disability or not, like that. everyone is a human being and doesn't deserve to be treated like that. having had henry, i would have had a hard time not decking the actors.

anyways, today henry had his first dental appointment. went great. his teeth and mouth are very healthy and look wonderful.

however, as i was filling out the paperwork before we went back there was a list of boxes to check. things such as does your child have- congential heart defect, heart murmur, seizures, etc. i then get to "mental handicap" and physical handicap." hmmm. i get this "those words are rubbing the wrong way" kind of feeling. and first let me say that i never get offended if people don't use the proper terms regarding anything. i was uneducated before henry and i can't expect anything different from someone who doesn't have a personal connection to someone with a disability. unless someone is being hurtful...then that's a different story.

but this is a dental office. it's a professional setting. shouldn't the proper words be used? so i'm thinking, do i say something? it's not a huge deal to me and i'm not a confrontational person, especially when i don't have to be. ;) also, this is our first visit. i don't want to come off as someone unpleasant. then on the other side if they have a problem with me saying something then this isn't the office for us. i call justin to get some info for the paperwork and run it by him. he thinks it's not the greatest words to use, either.

so what did i do? i put an arrow next to physical handicap and mental handicap and wrote in, "not the most up to date language to use." with a smile face. smiley faces make everything better. lol. i was looking at something in the office and watched the receptionist out of the corner of my eye go through the paperwork. she looked up, looked at henry and then looked back down at the paperwork. i'm assuming she saw. i also know the dentist and her assistant saw it as well because they discussed his heart defect which was in the same section. whether or not they change their forms who knows, but i gave it a little try. now if the word retarded had been used i probably would have actually said something or wrote in, "this is very offensive language, please do not use."

but what would you have done?

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one of my comments reminded me i had done a post on peoples' first language so i thought i would post the link.

coloring

2010-05-19T20:44:00.002-05:00

clapping for himself. ;)

school worries

2010-05-19T08:33:00.000-05:00

as i've metioned, before in the fall henry will be going to a mother's day out program for two year old's. it makes me quite nervous. he will be with all typical kids. i'm worried about him fitting in and if he'll be able to keep up.

i think henry does really well but once he starts school we will know how well he does. i know that he is delayed in areas but i also know at two there is such a wide variety of capabilities for all kids. i think as a parent of a child with special needs you want them to be at a level of his/her peers because it's easier on us. isn't it our own insecurities that is the real problem?

and it's not all worries related to down syndrome. HE'S MY BABY! haha. this is just the beginning of school and him growing and not being my little baby that i can protect. and yes he's ready, and quite frankly i'm ready. i love the kid but i need a break from him. ;) i know he will love it...but there is still a part of me that just doesn't want to even start this path. with him having down syndrome there is such a more intense need to protect him. it's one of those logic vs feelings kind of thing. logically, i know he will be fine. he will enjoy it, his teacher is excited to have him. the whole school is excited to have him. he will have friends. but feeling wise, i'm just scared.

yesterday i spoke with his speech therapist. i wanted to get some reassurance and to talk about things we could focus on more so since he is starting school. she thinks he is going to do great. she reminded me that at two there are kids who speaking full sentences and then there are kids who have one word. he follows direction well, he identifies things well. his speech has improved a lot lately and she thinks that he will being doing a lot more before school starts.

the only thing that bothers me is that he doesn't point. we try but he doesn't care. she said some kids just don't point. they don't care to and it takes them awhile. if i have objects in front of him and i ask for the horse, car, ball, etc...he gives it to me. but if we are looking at a book and i ask him to point or "where's the dog?" he won't do it. and if i point at an object for him to look at or give to me he knows what it means. to be honest i guess there's no need for him to point right now. if he wants something he goes and gets it.

you know, when you have a child with down syndrome you will hear over and over there is such a wide range of abilities. and that's true with any kid. the doctors will tell you that you won't know where he/she "lies in that range" until they are about preschool age. and you hope for the best. like i said, it's less work for you. everyone wants life to be easy as possible. do you wake up in the morning and say, "i really hope today is extremely hard and challenging?" probably not. it would be nice if the things we wanted were just handed to us. and i want things to be as easy as possible for henry, too. i don't want to see him struggle....anyways, the point is that we are approaching that age. that moment in time where we will see how he fits in with his typical peers.

that's a scary thing. and i know we will find our path, henry will grow and learn no matter what. i just hope we don't have to kick, scream, and scratch for everything we want for him. ;) but if we do, we do and we will. i want the best for him, and i want to do the best for him. which is difficult because nobody knows what that is for any kid. wouldn't it be nice if we all had a crystal ball to show us the future?

shooting hoops

2010-05-18T13:40:00.000-05:00

just some pics

2010-05-16T11:20:00.002-05:00

it's triplets!!!

2010-05-13T15:31:00.005-05:00

just kidding! :) today was our level II ultrasound with a perinatologist. very emotional day but the baby seems to be typically developing. the doctor didn't pick up anything out of the norm. while the ultrasound isn't 100 percent for picking up birth defects or disorders, we have chosen to stop there.

the doctor pointed out all the organs. i saw all four chambers of the the heart working well. two hands, two feet, one head. the feet are not clubbed.

little oliver is very active and a kicker just like his big brother. yes, in case you missed it henry is having a brother! ;) we were slightly hoping for a boy. i think it will be really good for henry, and us for him to have a brother. we haven't decided on a middle name yet. for a nickname we will call him "ollie."

this day has been 20 weeks in the waiting. well more so than that. we've stressed since henry was born. ;) i feel like we crossed a hump today and the next one will be when oliver is born. today was a huge sense of relief. this pregnancy has been exceptionally worrisome and stressful. but today is a gift from God. it's time to be excited and move forward. whatever comes our way, comes our way. but i feel much more confident that this baby will enter this world and i will hold him in my arms. it's all just surreal in a lot of ways. i can't explain it.

thank-you for all the support and prayers you've given us and i hope that you continue to keep baby oliver in your prayers.

documentary about down syndrome

2010-05-12T13:05:00.003-05:00

justin forwarded this onto me. at the 2010 tribeca film festival in new york, "monica and david" won the award for best documentary feature. it is a documentary about the life of a married couple with down syndrome. i don't know a whole lot about it since i haven't seen it, but am looking forward to its release in october on HBO. for more info check out the film's site- http://www.monicaanddavid.com/. the trailer looks great!

funky dream

2010-05-11T09:30:00.002-05:00

last night i dreamt that we had our baby. i think it was a boy. but at two days he was sitting up, then all the sudden he was walking later that day and fell down the first flight of steps at my parents house. perfectly fine after the fall, i picked him up and put him back in his crib...only to find that i had twins! so crazy the things you dream. ;)

mother's day pics

2010-05-10T11:47:00.002-05:00

we had a very nice relaxing weekend this past weekend. the weather was crummy on sunday and i really didn't feel like doing too much. but saturday after church we went out to eat at a burger place i've been wanting to try. it was rather tasty. then we went and looked at baby stuff. i like to just walk around babies r us and toys r us sometimes and look at all the stuff they have for henry and now the baby.

sunday justin was going to make me breakfast but i was wanting biscuits and gravy- my favorite breakfast meal and he doesn't know how to make it. but he learned this sunday! ;) wish it was a little lower in calories because then i'd eat it all the time! and i asked justin if he would just help me out just getting the house clean. mostly clean the bathrooms. that to me is the best mother's day gift i could receive. so we spent a couple hours in the morning getting things straightened up and then headed to the park.

it was great because the whole day had been overcast and was suppose to rain. so noone was really at the park. the ducks were actually hungry. usually we try to feed them and they swim away. henry liked that until a goose bit him. i saw it coming and couldn't get to him in time. i think it scared him more than anything. no markings or redness. he cried for a bit, but it didn't keep him from feeding the ducks. then a goose tried to attack me. it started running after me and hissing. geese at any park are just mean.

later for dinner we had spaghetti and meatballs. my favorite, FAVORITE meal! we also had my girlfriend and her son over for dinner. her husband is a pilot and was out of town. she brought chocolate cake!!! yummy!

i hope all of you had a wonderful mother's day.

this rainbow was actually from a few days ago. it was the brightest rainbow i've ever seen. there were actually two right by each other, one arching over the next.

henry's future wife

2010-05-08T10:19:00.003-05:00

i just found out that miss ella grace will be fighting the fight of her life. she is headed towards luekemia treatment. please, please keep her and her family in all your hearts and prayers. we've had the wonderful pleasure of meeting ella and her family while they visited people here in texas. everytime i visit her page i see her adorable little face and just picture her and henry together as little sweet hearts. they would make the cutest couple i've ever seen, with their little rosy cheeks and blonde hair.

ella grace was born with Transient Myeloproliferative Disorder (transient leukemia). it is a condition that children with down syndrome are at an increased risk of having. (roughly 10% of all kids with down syndrome has transient luekemia) there is a 30 to 50 percent chance of the disorder progessing into leukemia.

check out my old post of the time henry met his future wife.

meeting the teacher

2010-05-07T11:45:00.002-05:00

this morning, we all went to meet henry's teacher for the coming fall. i was nervous because this was going to be a different teacher than the one i had met back in january. if you remember henry was on a waiting list and then got in after they decided to open up another two's class. i imagine a child going to school for the first time is always a little nerve wrecking, especially when your child has ds and is going to an all typical class.

henry didn't want to do much of anything while we were there, which is not like him. he usually runs off and gets into trouble. today he stood by our side. i was hoping that he would show the teacher and other parents that he can do all the things the other kids were doing...but they will see that over time. there were definitely kids that were more advaced than henry speech wise. but a lot of boys in general are very delayed so i'm not too nervous about that. i actually overheard a couple moms talking about their kids being delayed in this or that which gave me a sense of relief. that is one great thing i've learned from taking henry to therapy...is that many, MANY kids in general aren't great at everything. everybody has weaknesses and strengths. i just have to remember that and i need to look no further than my own coordination struggles! ;) let's just say gym class was a nightmare.

the teacher was very nice. i talked to her briefly. she has been teaching for quite awhile and started out teaching special education at a private school. in my head i'm thinking, "ding, ding...we have a winner." again a sense of relief. her degree is actually special ed.

later we went outside to the playground and henry was much more active then. climbed up the stairs and went down the slides. i don't think i've mentioned but he is starting to walk up and down (not crawl) the stairs while holding onto the railing. he does it all by himself. i just have to point sometimes to the next spindle to grab onto, but i don't have to hold him. today, he walked up the stairs on the play structure, holding onto the railing all by himself with no guidance.

anyways, i got to talk to a couple moms outside who were extremely nice. i really hope to meet some new families. that is the main reason i wanted him to get into our parish's pre-k program, to meet other families in our own parish. which reminds me i need to call the other church and tell them that henry will not be attending.

hope everyone has a wonderful weekend and mother's day.

Doing laundry

2010-05-03T21:32:00.001-05:00

Below is a video of Henry doing laundry. For some reason he loves doing laundry. I think it's because he likes to put things in and out of containers. I try to sneak around doing the laundry because...well he slows me down and I don't want to spend 10 minutes putting clothes in. But he's getting quicker and he ends up sneaking up on me. And then there are times I am not in a rush and I let him help. Sometimes he puts dirty rags I have on the floor in the dryer while I'm trying to put clean clothes in it. His favorite part, however, is pushing the start button. Never saw a kid so excited about doing laundry. Hope it stays that way when he's 16 but some how I doubt that will happen.

Little update on language. Henry says ba-bye very clear now. He say hi dad now, too. For the longest time we were working on uh-oh and he would only do the uh part. He's finally adding the oh on it. His new thing is na-na-na for no no no while shaking his head- we're having so much fun with that one. ;)

Sent from my iPhone

it's never too early

2010-05-02T11:00:00.005-05:00

Food cravings

2010-05-01T13:37:00.000-05:00

My cravings are definitely different among pregnancies. With Henry I think the things that stood out were reubens, sherbert, oranges, and chocolate...especially chocolate covered peanuts. I liked sour things.

With this baby things that stand out are cereal, chewy candy, salty foods, especially sour cream 'n onion chips. The bad thing is I'll eat nothing but a specific item I crave and then I'll get sick of it. Lately, I've been cravings sub sandwiches but you are not suppose to eat them while pregnant. And yes I know I can heat them but it's just not the same.

Other differences. With Henry I just remember having really bad sciatic nerve issues and his body, probably his feet, jammed up my ribs. I had mild, very mild heartburn from time to time.

This pregnancy a lot more aches and pains. Heartburn is becoming an issue. I don't think my morning sickness was as bad with this baby. Sinus issues have been the worst. I just feel like I'm weaker if that makes sense. I suppose that is just from having another kiddo already.

Our new little one will be taking over the nursery when the time comes. We will move Henry into another bedroom. I think we will go for a sports theme. I'm not sure though. We have time to figure that out. I want to do something fun with the walls. Any ideas?

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why are my children trying to kill me

2010-04-29T11:19:00.000-05:00

i found my son henry at the top of the steps this morning. yes he was teetering on the top step. i heard him wake up on the monitor and he was fussy. usually if he wakes up fussy he goes back down. well he fussed and then nothing. the next thing i hear is something tumbling down the stairs and hitting the baby gate at the bottom of the stairs. i shoot up and THANK GOD, i see him standing at the top and not at the bottom.

i didn't even hear a thud from him getting out of his bedding- nothing! needless to say, we will have two gates on our stairs. my heart just stopped when i heard something falling down the stairs.

18 weeks

2010-04-28T14:23:00.007-05:00

i can hardly believe that it's been 18 weeks already, 22 more to go. this pregnancy has been more difficult both emotionally and physically. i am feeling much better, though. the sickness has subsided for the most part. the only time i get sick is when i stress bad and my blood pressure goes up. when my blood pressure goes up i get nauseous. fortunately, those days are becoming less and less. in two weeks we have a visit with a perinatologist to have a sonogram and check the baby's overall growth and make sure everything is developing properly. i hope and think that i will have some major relief after this visit if all goes well.

i'm not going to lie. the past few months have been challenging just dealing with what-ifs. i can logically tell myself that this baby will make it and be born. chances are that will happen. but emotionally i tell myself that there aren't any guarantees in life. it's kind of odd. it's almost as if the pregnancy hasn't fully dawned on us. i don't think we'll believe it's going to happen until the baby is home safe and sound. it's also hard because the past few years have been so intense and wrapped around henry. i try to picture another child and it's rather difficult. it won't be all about henry! ;) which is going to be the best thing for henry and for us.

and being sick for so long doesn't help matters, either. when you are sick for an extended period of time you just get down. you add on taking care of a toddler during that and it isn't easy. not feeling good and having to take care of and carry around a 35lb two year old is not easy! :) plus, there's no drop henry off and g-ma's for a couple hours to get a break. justin and i don't the luxury of family here and all our friends have kids of their own and are super busy. but here and there i'm starting to feel like myself again and am enjoying doing things i just didn't feel like doing. simply getting outside with henry and getting some fresh air really makes a difference. for awhile i knew i wasn't being a great mom and the house was going to s*** and we were eating frozen pizzas more and more. again, logically i tell myself- it's okay...you're pregnant...feeling poorly is temporary. but emotionally i feel like a deadbeat. my body is definitely more achy and stressed from having to take care of henry as well.

i carry him upstairs to go to bed and i think i'm going to pass out. he weighs a ton! he's just a solid kid. yesterday i was hurting really bad. just cramping a lot and hurting from doing too much during the weekend i guess. but sadly i don't feel like i'm overdoing it. i can't imagine what it's going to be like when i'm towards the end of my last trimester. we watched my girlfriend's son the other weekend and i picked him up. oh my goodness...it was like picking up a feather. it was so nice. he's six months older than henry! and i don't feel henry is overweight. his weight and height are in line. yes, he has a belly and chubby cheeks...but he's not rolly. it'll be interesting when i'm even bigger. luckily, i've only gained a couple pounds. don't get me wrong i had too much to begin with and i'll probably blow up now that my appetite is kicking into high gear...but it's nice that i'm doing good right now.

i do look forward to when this baby is here. i can't wait to see how the two interact. i know it's going to be so great for all of us to have another little one. henry will be going to school all day twice a week starting in august, which will be great! we both need some space. lol. henry is getting sick of justin and i. therefore, i'll have some one-on-one time with the new baby. we are going to find out what we are having. we do have our names picked out already. we had them picked out before i even got pregnant. i can't wait for the little baby clothes, the little feet and hands, the new baby smell...haha. just something lightweight will be nice. lol. i wish i could have a sonogram everyday and see the baby. that would be wonderful. everytime i see him/her i feel so good afterwards. and i don't know how most women do it. with henry and this baby i am/was "high risk." i had a lot of sonograms with henry and have had i think 4 already with this one. most women just get two or three their entire pregnancy. that would suck! i don't know how they do it. i would go nuts...well more nuts...i'm already there! ;)

in two weeks i will let you all know what we are having and what his/her name will be!!

tire clueless

2010-04-27T08:51:00.000-05:00

i come home from an aggravating grocery trip with henry. walk in the door and justin says i have bad news, "my car didn't pass inspection because it needs new rear tires."

to which i reply, "UGH, what?" "how much are they are?"

he tells me the price to which i reply, "WHAT!" haha. i then go on to explain why i don't understand the price. we just replaced all four of my tires and the cost of his two are about 3/4 the price of all four of mine. i tell him, "your tires are smaller though, there's less tread and rubber. they should cost less!" he just laughs and says that's not how it works. you see, i have a jeep and he has a sedan. my tires are huge! his are these thin small tires compared to mine. come on?!

then he goes into a speal about low profile tires, etc, etc...i just tune out- whatever! so apparently i don't know anything about tires.

well into our toddler years- yikes!

2010-04-26T09:30:00.000-05:00

not sure if i've mentioned henry's latest behavior. ;) we are well into our terrible two's. he now like to throws tantrums when he doesn't want to do something. if we are walking and he doesn't want to go the way i'm going, he simply buckles his knees and i have to drag him all while he's whining and screaming. while grocery shopping now, if i'm taking too comparing products/prices he starts screaming.

he usually refuses to diaper changes now. and i must say his pointy little heels don't feel good when they're hitting your leg/stomach. sometimes he's refusing to feed himself. he's pretty much doing all your typical "i don't have to listen to you" toddler stuff. so now i tell justin henry is his and i'll focus on baby number two.

henry is so lucky he's cute is all i can say!

The things husbands say

2010-04-22T15:50:00.001-05:00

Last night for dinner I made chicken fettuccine with broccoli in it. I made the comment that this is the first time in awhile we've had a vegetable. The thought of veggies the past few months has made me sick to my stomach. Justin says with a smile, "I noticed and have been secretly enjoying it." :) haha.

Maybe I need to get a cookbook where veggies are in hidden in the food. Needless to say I bought vitamins for Henry and I've been trying to at least feed him some when I can stomach the smell.

Sent from my iPhone

2010-04-20T21:30:00.000-05:00

DSGD ANNUAL PICNIC- CHECKING OUT THE LADIES IN THE BOUNCE HOUSE

LOVING THE BUBBLE MACHINE

FAVORITE OF THE DAY

STAYED UNDER THE PARACHUTE FOR AT LEAST 30-45 MINUTES

NEW FISH

WE BOTH LIKED THE FROG THE BEST- HE'S STILL NOWHERE TO BE FOUND

RELAXING

ITEM TO SHIP OUT FOR SWADDLED IN AWARENESS

old video

2010-04-15T21:34:00.004-05:00

finally have gotten around to posting some old video clips.

I'm allergic to my husband

2010-04-14T09:00:00.001-05:00

My allergies are out of control. Bad to good to bad again. I've never had problems like this before. Last night justin got into bed and I had another coughing episode. I got one wiff of his after shave lotion that he's used forever, mind you and I couldn't stop coughing. He ended up sleeping in the other room. Once he left and the smell was gone I was okay and got some sleep. So needless to say I'm going to the doctor today. I think I'll tell them my problem is that I'm allergic to my husband!!!

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going back

2010-04-12T12:38:00.000-05:00

starting from the beginning of the pics below. we went back to st. louis for easter. first, on saturday we had a family birthday party for henry. it was nice to have mine and justin's family together. our families get along very well which makes things very relaxed and enjoyable for all. henry had a wonderful time playing with all his cousins. the party was elmo themed of course! he got great gifts, including a fish tank which i'll talk about in a bit.

the next day was easter. again, we spent time with our immediate families and even some extended family that day. henry eventually caught onto egg hunting, but enjoyed throwing them out of the basket more. i was so mad at myself, though. henry has a really nice easter basket that is line and monogrammed. the past two easters we have gotten a picture with him in it. while he wouldn't fit in it this time around, i wanted that to be a continuing tradition of having a pic with the same basket each year. so we picked up an elmo basket while in stl. life goes on ;) at justin's g-ma & g-pa's, it was really sweet...henry's cousins were helping him out and holding his hand to get eggs. they are so good to him and he loves them. he got to spend some good quality time with them earlier in the week as well.

as always, the time sadly goes by too quick and we were worn out. with me being pregnant this time around, it was especially tiring. luckily, i have a very supportive mom and two sisters who helped me out a lot with henry's party. so a big thanks to them. the drive home was sad. partly because of the hormones and tiredness, but it's always hard to say good-bye for now.

i forgot to mention that during our drive to stl, our church called and told us that they opened up another two-year old class and henry has a spot if we'd like. such a blessing. the school we had lined up is wonderful, but our first choice was of course the school that is run by our parish. my only concern is they are hiring a new teacher for the class. hopefully, the teacher will be supportive of henry and open-minded. the director of the school is simply wonderful so i imagine anyone she hires will be great, too. we'll see!

moving on to my post just below. the one with the link to the photography site- fickle zeal...a couple weeks ago i saw a posting on facebook about a photogragh session for kids with down syndrome. the photographer, jenna, was dallas based and has a daughter with down syndrome. this past month was down syndrome awareness month, and to honor the month jenna was offering free photo sessions and photos for 10 spots. i emailed her and told her we were interested, but got an email back saying the sessions had already been booked up. she said she could keep me on the waiting list in case someone backed out, but would definitely keep us in mind for next year. i emailed her right back and asked to be on the list and within minutes she responded saying someone just backed out and we got a slot! i was so excited, especially since we haven't had professional pictures of henry in awhile.

we met in grapevine and henry couldn't have been more cooperative. we met jenna and her husband, Andre who was also photographing. they were an amazing team and so sweet. it was a heart-warming day to say the least. it's so touching when people show such generosity.

moving on to this past weekend. i've been battling sinus issues all week. i actually had to quickly exit the main congregation at church because i was having a coughing fit. i went to the bathroom and coughed for at least 15 minutes. it was terrible. i've never had such issues with allergies before. i couldn't breathe, tears were streaming down my face from coughing so hard. it was rather scary. i can only imagine what people thought as i coughed up a lung or two. i think it happened in church because they were burning insence this past sunday. it was bad. so i got some claritin and last night did a saltwater nasal irrigation and gargled saltwater. that was a trip. it did help so i did it again this morning.

after church i felt much better and we went to our local ds chapter's annual picnic. i saw a lot of familiar faces and got to catch up with some friends. henry had the time of his life. they had tiny bounces houses for the little kids and he spent at least a total of an hour...probably two going in and out of it. he can't jump yet, but he had fun walking around in it and being popped up when the other kids jumped. there was a couple tackling moments, too! the other highlight for henry was the parachute. they had a great big parachute like the ones you probably remember from grade school gym class. one of the volunteer school groups would make it ripple, go up high and then enclose it around them, etc. i kid you not, henry spent at least 30 minutes under there just running around and watching the older kids making the parachute do different things. it was funny how excited he was. and of course he loved watching the other young kids go crazy underneath it, too. i have pics of that to post later. it was a fun day and i'm so glad we decided to go.

oh, and before i go. funny story about the fish tank henry got for his bday. we got it all set up, went and got some "tester" fish. two fish and a little water frog. henry watched the them for quite a bit when we got home. well the next day we woke up and the frog is nowhere to be found and there are at least a dozen baby fish swimming around! we looked all over for the frog. he is gone and he was my pick :( most of the baby fish are still alive. i looked up how to feed them so we'll see if they make it. so weird.

i haven't cried that much...

2010-04-09T12:52:00.003-05:00

...in a long time. please go to http://www.fzphotography.com/blog/ and check out the video clip under the blog title "behind the scenes." i encourage you to watch the whole video to see some great kids, but if you'd like henry's part is at 3:32. the post right underneath that one has some still pics as well of all the kids. it was such an amazing experience and i'll post more about it later.

more bday fun back in stl (easter pics below)

2010-04-08T21:09:00.013-05:00

easter pics

2010-04-08T20:52:00.015-05:00

hippotherapy

2010-03-24T17:31:00.003-05:00

some of you have asked me about hippotherapy. and yes kids with ds usually don't get their neck x-rayed for AAI until 3, but we had to because the hippotherapy places require the test.

from the american hippotherapy association:

"hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction.

The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Clients respond enthusiastically to this enjoyable learning experience in a natural setting.

Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities."

I've heard from so many parents and therapists it is supposed to be amazing for kids. a lot of kids say their first words while at hippotherapy sessions. i can only imagine how much it would build up core strength.

update on neck

2010-03-24T14:08:00.002-05:00

just got off the phone with the pedi. office and henry's vertebrae is normal. the new x-rays show everything looks good. the first round looked odd because of how his neck was turned! good news, check that off the list and now he can do hippotherapy. time to call them!!

return of the appointments

2010-03-23T14:56:00.003-05:00

we've had some appts for check-ups and more to continue...first was henry's one year follow-up for his heart surgery. or i should say one year from the last appt we had. his heart looks perfect! no leakage around repair sights, everything looked great.

we also had an appt with and opthamologist. eyes look great except he is a little far-sighted. nothing he needs glasses for. the dr. said she actually likes to see kids at this age be a little far-sighted because kids tend to naturally become more near-sighted the older they get. so we go back in one year to see if anything has changed.

we finally went in to get henry's neck x-rayed to check for any Atlantoaxial instability (AAI). he does not appear to have any issues relating to AAI, but the radiologist thought his second vertebrae might be abnormal. not exactly sure what he thinks might me wrong, but the nurse at the pedi's office told me he wants to do another x-ray from a different angle. he actually wants to take one with his mouth open. she asked me if i thought he would do that and i just laughed. ummm, no. he isn't going to open his mouth wide on command- so sorry. ;) she said the other alternative would be to sedate him and do a ct scan. i asked her if they can hold his mouth open and take the pic. she didn't seem to know and was going to get back with me. we'll see. when she calls back i'll see how imperative it is to do this right now or if it's something that can be waited on until he understands the concept of holding his mouth open for an extended period of time.

we have an appt with an ent later this week to do an annual on his hearing and i still need to make an appt to see the dentist for the first time.

henry's do extremely well at therapy lately. taking off in OT, especially. they are working with him on stringing beads, puzzles, put together/taking apart pop beads, etc...and doing some strength building exercises.

for PT his next set of goals all relate to jumping. the therapist tooking me back to show me what she was working with him on. part of it was jumping on a small trampoline. it was so cute. he actually understands the concept which i was impressed with alone. he tries to jump by going from one foot to the next. i was equally surprised to see that he loves the trampoline and was mad when they put it away. so we will be getting a little exercise trampoline for him. the other set of goals relate to him balancing on one leg.

Speech is of course the biggest struggle right now. he says bye, bath, cheese, and dad on a very consistant basis. everything else is partial words and some things come and go. the other day he said duck at the park! he is learning more signs, too. the cutest is monkey.

not much else going on...so i'll leave you with that

thanks!

2010-03-17T13:49:00.004-05:00

i want to thank everyone for all your kind words and support. it's so nice to have a network of people that understand your feelings and what your going through.

yesterday, i laid in bed while henry was napping and just thanked God for a wonderful day. I used to find that all i ever did was ask from God. me, me, me! after having henry i've realized that you need to be so very thankful for the good days and simply ask for strength on not so good days. and yesterday was a very good day! i'm feeling some excitement about baby number two creep up ;)

i've been looking at double strollers and was having a problem finding one that would work with the chicco key fit carseat we used with henry. but low and behold today my problem was answered.

it's the chicco cortina together and it comes out this spring. isn't it pretty!!! i just hope it's as good as it looks. from what i've seen online about it, it's supposed to be pretty good. i just hope it has a higher weight capacity than some of the ones i saw at babies r us. the max weight for the toddler was 40lbs on a lot of the duos. henry is already 35.5lbs- yikes!

Some relief

2010-03-16T13:30:00.002-05:00

Today I had a doctor's appt for the baby. I had a sono done to look at the baby's nuchal fold and a couple other things. To be honest their was a big part of me that didn't to go to this appt. I thought about simply closing my eyes until I was told something one way or another. I basically wanted to stick my head in the sand. I asked God to give me the strength to face whatever happens today and off Henry and I went.

Justin met us at the office. He was as nervous as I was. They called us back, I laid down and closed my eyes. I opened them when she said there's you're baby. It was moving around and we saw it's little hand as if he/she were waving to us. The nurse/tech took some measurements and told me everything looked normal at this point. The nuchal fold measured .11. under .3 is what they want to see. I kept asking her, "are you sure everything looks okay?" "what about...is that normal?". she also told me that she saw the nasal bone/bridge which is another good indicator for a child not having ds. So today was a relief. We go back in a month and I got the card for a specialist to do an in-depth sono at 20 weeks.

With each appt I get more and more reassurred that this baby will enter into this world, but the fact is that I haven't let myself get excited. I feel guilty for that. But there is such a part of me holding back to protect myself...which how do you really protect yourself from losing a child? silly I know. And of course this pregnant isn't as excited as the first which i know is normal. I also know that things will get better with time. It will be hard not to get excited when I feel the baby kicking. I just wish I could enjoy this pregnancy as much as henry's. But once the blinders are off, they are off.

Can I please have my blissful ignorance back??

Sent from my iPhone

wordless wednesdays...well almost

2010-03-10T12:38:00.019-06:00

looking at the monkeys

checking out the big kitties
signing lion together

"here, fishy, fishy, fishy..."
"hey, where are you going?"

picnic at the park
"hey, wait for me"

throwing around the ball
really getting into the swing of things
hard at work
computer frustrations

emotional mess

2010-03-08T11:12:00.003-06:00

well the pregnancy hormones are running rampant. maybe the rainy, gloomy day we had yesterday and today are adding to it. maybe it is partly because i read some stories from the book gifts 2 last night. maybe it's henry turning two. whatever it is, i'm feeling very overwhelmed today. i've been teary eyed since i woke up. and it didn't help that the dishwasher started making funny noises when i tried to run it and then henry started screaming because of the noise.

i'm just so nervous about this baby to be honest. i want this baby more than anything but i'm so anxious and worried. i'm normally so positive but i just keep thinking something is going to go wrong. and then i think about henry going to school and how there's no turning back- i'm not ready. he's ready of course. he's ready for anything. and we don't have any family here to lean on.

last night i was reading stories from gifts 2 and i just cried and cried. i cried because it's over. the worrying about henry's health (knock of wood) is over. i've seen first hand that he's going to be okay. he's so beautiful, smart, strong, and happy. he's everything you want a child to be...that's a great thing- right? lol. you try so hard to stay strong. you try so hard to do the right things for your child. i remember when henry had his heart surgery. i didn't cry once about it...not once before it and not during it...but i cried when it was all done and he was going to be okay. i couldn't help but cry that it was over. and i think that's what i'm going through now. you can only be so strong for so long, if that makes any sense?

sometimes it's hard to let go of pain...it's hard to let go of the past. and i think what if we are starting this all over again with baby number 2. am i ready for that? can i be strong enough? i know that life will continue on and justin and i will do what we have to do. we will continue on, but that doesn't make things any easier. i just want something to be easy for once.

birthday fun

2010-03-04T11:16:00.002-06:00

thanks for all the birthday wishes! henry and i both had wonderful birthdays. my family came into town this past weekend for mine. it was a wonderful time! for henry's birthday we had a small celebration with just henry, justin, and i. we are actually going to be having a family birthday party for him in a few weeks. elmo themed of course. we decided to get him a little gym set. it was actually pretty funny. we went to toys r us on his birthday and looked at gym sets and bikes. justin and i decided it's a little early for a bike. his feet could barely reach the petals. and he does not need any more little toys! lol. so he got the gym set. well we take the paper to the check-out and they call to have it brought up front. when they got it up front i thought, "surely, that's not for us." oh, but it was and it was a huge box. my eyes got huge! justin and i failed to think about the box. there was no way that thing was fitting into my car. so we had to drive back home. henry and i stayed home. justin drove back and they took all the stuff out of the box and put it in the car.

it has been so great. he loves it. and it is such a good workout for him. he wears out pretty easily right now. but he'll build up some stamina, especially when he gets better at pulling himself up the ladder. it is a perfect "therapy" gift. he enjoys it and it works his entire body. he's slowly getting the hang of going up the ladder himself. and to my complete surprise he's already figured out how to scoot to the top of the slide and pull himself down to start the sliding motion. :)

right now we set it upstairs in our bonus space. there's not much up there and the weather isn't quite nice enough yet for him to get much use out of it outside. i have some video to put up later.

in baby news. the pregnancy is going good so far. the futher the pregnancy goes along the more relief i have. i had an appt tuesday and we heard the heartbeat, so i didn't do the ultrasound. the heartbeat was good enough for me. my doctor brought up testing again. justin and i decided that invasive is not for us and we really aren't interested in the sequential screening. it's not a definite yes or no....and i know me. i know that no matter what the results say it will not stop me from mind tug-a-war. i'm already paranoid enough right now, i don't need anything to add to it. HOWEVER, we are going to do a sonogram in two weeks where we will look at the nuchal fold and some other things. i told my ob that i'm simply interested in looking for birth defects or anything that will prohibit this baby from being born or surviving after birth. at around 20 weeks i will more than likely go to a specialist and have an in-depth sono done to look for any issues. like i've said before i'm not worried about syndromes or disorders. just as it was with henry all i care about are surgeries and birth defects. that has been the hardest part with henry, not down syndrome.

the morning sickness has eased up a bit. still not 100% but better. i'm all kinds of emotional. i cry at everything. even sappy commercials make me cry. yesterday i was very emotional about henry turning two. it's has gone by too fast. i was rocking him to sleep which is something i don't normally do, but as i was rocking him and he was sprawled across my lap...it reminded me that he is no longer a baby and never will be. you just want to keep them small. partly because you don't want to lose your baby, but also because you know his future will take a lot of strength and courage. and maybe part of it is i'm not ready to let go of everything we've gone through with him...hopefully that makes sense to some of you. as scary as the surgeries were, as worried as i was about his health...it was a simpler time. and i know simpler times are not what's in store for us. it's scary. and i know deep down he'll be okay. i know we'll be okay. but it doesn't make fears go away completely. the smaller they stay, the more you can protect them.

Happy 2nd Birthday, Henry!!!!!!!

2010-03-02T22:21:00.021-06:00

a mixture of things

2010-02-25T15:21:00.001-06:00

first and foremost I appreciate those who were praying for my good friend. she sadly miscarried on Monday. She was 12 weeks. Please continue to keep her and her family in your prayers. It just not fair and you simply don't understand why bad things happen to such wonderul people.

This Tuesday I toured another cathlic school for Henry and loved it! They were very positive about Henry. One of the teachers has a special place for kids with special needs, but she might be leaving next year. I really hope she comes back. I. Talking with her she seemed to know a little about down syndrome. The other teacher was great as well. I spent quite a bit of time in the classroom with Henry. He made a friend! This little boy was being so sweet to Henry. He would share his snack and then his toys. I think he is going to do really well. I am just so relieved to have found a place I'm happy with and he has a spot! We were invited to come back at an ealier time to see what activities the kids do. I had gotten there at the end of the day where it was just free play. We will definitely go back so Justin can see the school. He was out of town Tuesday.

This weekend, most of my family is coming to visit for the weekend. I am really excited, especially since my parents are taking us out to dinner for my birthday!! It's also hard to believe henry's bday is right around the corner as well. Can not believe he will be two. But I better get back to cleaning!!!

an uplifting moment

2010-02-22T13:21:00.002-06:00

the past few days have been solemn ones. but yesterday was partly uplifting. we attended the quarterly new parent meeting associated with our local ds guild. i go because i'm on the new parent committee and to answer any questions or concerns new parents may have. but i know that most new parents simply want to meet other new parents like i did. the real reason why i go is to bring henry. yes i'm proud of him and i don't mind showing him off ;) but i remember in the beginning all i wanted was to see older kids. i wanted a glimpse into what life was like for children with ds at different ages, especially around the toddle age. i think that age was important for me because it's the first step in childhood when a child is doing all kinds of fun things. i wanted to see kids walking, climbing, kicking balls, etc. i wanted to know henry's near future was not going to be gloomy as i had imagined it.

so i bring henry to these meetings. during the beginning of the meeting and speaker time henry is in the room next door playing with all the siblings. but towards the end i bring him in and let him be him. you can see in the parents eyes when they look at him...a sigh of relief in a way. i remember that sigh of relief. i had it when i met my friend ktistin for the first time, and her son ryan. ryan was i think close to three. i will never forget. but i remember seeing him climb over this little house wall. i remember seeing him go up the stairs and i remember him just running all around, laughing. he was without a doubt a typical toddler. plus he's adorable!

henry looks great, he's extremely healthy. he's big and tall. he looks like any other toddler and i enjoy new parents meeting him. henry is already a self-advocate without even knowing it. ;) i'm not trying to make it sound like henry is the greatest kid ever and that i parade him around...but hopefully you know what i mean. i just want to give parents that hope by them simply seeing henry do everyday toddler stuff. yesterday, i told parents that he kicks the ball, flips over furniture, climbs on everything, tackles, plays basketball, etc. he's all boy. and it warms my heart to see parents light up a bit...i know the dads especially liked hearing that henry is rugged. lol.

and a lot of parents assume that henry must of been healthy from the start. after i tell them that was not the case i know it makes them feel even better. the beginning is so hard and i think it's important for parents to see older kids doing all kinds of things....especially at a time when a lot of their little ones are fragile, still in the hospital, have medical issues, etc. during that time you think you will never get out of it. you think this is going to be your life forever. it is definitely hard to see the other side. but most kids get there eventually. you just have to have hope.

i also want to thank everyone for keeping my friend in your prayers...

With a heavy heart

2010-02-20T21:46:00.001-06:00

This week I found out some very, very upsetting news about a dear friend of mine. She is living my biggest fear in life right now. Please, please, pray for her and her family. Pray for strength, peace, understanding, and hope.

bad news about school

2010-02-18T09:06:00.003-06:00

well henry did not get into the program we wanted him to much to our surprise. he is number 12 on the waiting list. registration is not over, it is broken into days with certain criteria needing to be met. so there will be at least 12 kids on the waiting list for the two year old group. the reason? they changed the program to a two-day program instead of one. so they had more interest and could take less kids. the director seemed to be actually upset that henry was not able to get in. we were told they are looking into things to hopefully make all families happy. apparently, there were a lot of moms upset.

i'm not going to get my hopes up and we did find another catholic based pre-k for him. he would definitely get a spot. they seemed very willing to work with henry but they weren't as all warm and fuzzy as the other school. we are going to tour it next week so we shall see. i am very upset but i do know we will find something for him. i'm not as worried about that i suppose. i know that things do work out one way or another. it just really sucks that NOTHING is every easy. nothing has ever been easy for justin and i. i just wish for once there would be step one and done! we are very blessed but man we have to pass a lot of hurdles and it gets soooo tiring.

henry is still getting over being sick. he's acting better and better. i will be so happy when all his teeth are in. i know he will be, too! i don't know if it's a common thing among kiddos with ds but he gets teeth all at once. i mean like four or five teeth at a time. right now i think it's three. not sure. i try to keep my fingers away from his mouth because he can bite down hard.

the saving grace of the day. i got a new phone yesterday!!!! my old phone broke and i had it for years. i actually hated that phone with a passion. my new phone- the iphone and it is way too cool...too cool for me to even have. haha. i think justin felt bad for me. he knows i'm going through a lot right now. and he told me to get it for my bday. not trying to sound like a martyr...but i don't buy things for myself since we've had henry. i just don't. it's not me to spend a bunch of money. the last thing i bought was a $50 purse a year ago. and that's the most i've spent on a purse in my life. i'm currently a frugile person so i was teetering on buying the iphone. it didn't cost all that much because my plan was up and you get discounts...but still did i need it- no. did i want it- heck ya!

so happy early bday to me! ;) it definitely took my mind off things! school- what? don't know what you are talking about...:)

sick again and again and again...

2010-02-15T11:31:00.002-06:00

ahhhh. henry is sick again. poor little guy. it doesn't seem to be as bad as it was a couple weeks ago. it's part teething and part bad cold. at least he's not running terrible fevers and is sleeping through the night *knock of wood* except for one night. yesterday was ellie's bday. our dog is 4 years old. i remember her first bday. we treated it like any kid bday. lol. cake, presents!! after having henry...her bdays are less thrilling. i did make some popcorn especially for her though. she LOVES popcorn, so we shared some. she's a good dog...just can be really annoying at times. that and her cuteness wore off quickly after having henry. poor ellie. she's probably going to go into severe depression when the next little one comes along.

wednesday i have to register henry for school. i hope he gets a spot, because it's going to be difficult to get him into other places. most schools have already finished their registration process. i'm trying not to worry too much. we always figure it out and find a way. we've been told there hasn't been a waiting list for the two year olds yet, so this year better be the same. *fingers crossed*

the snow has almost completely melted. my snowman is all that's left and there not much of him either. i am soooooooooooo ready for warm weather. being couped up inside stinks. this winter is lasting way too long. i want to open up the windows and get some fresh air in this house. i want to go outside and feel the warm sun and takes walks, go to the park, etc.

first time in the snow

2010-02-11T17:26:00.000-06:00

...well the first time henry couldn't walk so that doesn't count! henry didn't dig the snow too much. probably because we don't have proper snow clothes for him and he was like ralphie from the christmas story. that and his shoes were way too big. they were shoes that someone handed down to us and were all i had that would fit over layers of socks. his own shoes wouldn't fit.

funny thing is we were walking to the door to go in and henry turns back around and starts walking out into the yard. then headed straight to the snowman to attack. yes henry of course tried to knock down my faceless snowman! i can't believe it is snowing this much. i haven't seen this much snow in a very, very long time!

we interrupt our regularly scheduled program....

2010-02-11T10:46:00.007-06:00

for a weather update....

for all of you out there that think texas is a state that is always hot, miserable, and never gets cold...these pictures are for you!!! ;)

we are suppose to get 5 to 7 inches. can't wait to take henry out!!!

a whole bunch of emotions ;)

2010-02-10T13:52:00.006-06:00

first i want to say thanks for all the congratulations via online, texts, phone calls, etc. i had to wait until justin came home to have a computer because mine had a virus on it and wouldn't work. luckily, i finally figured out how to get rid of the virus and now my computer is okay! makes me so mad people create that junk. oh well, what can you do?

now onto more important news;) i'm 7 weeks, due sept 29. i found out right at four weeks. we had planned on before i found out, keeping things a secret for awhile with our next one. but i was so excited and didn't want to tell justin over the phone so i called my mom. which led to having to tell justin's parents, which led to telling our siblings, and so on. but i figure by now the more people that know, the more people can say a prayer or two for us.

i made henry's shirt in a rush before justin got home from work, because i had went all over heck to find a premade shirt and didn't find one. it was pretty cute when he finally checked out what henry was wearing.

my excitement quickly became major anxiety. i had to push up my ob appt simply because i was going crazy. my first visit i got a sonogram. she did a sonogram on my stomach and didn't find anything. i started crying. and justin wasn't there because he couldn't make the sooner date when i switched. having had henry i kind of know what to look for and i asked her, "you didn't see anything, did you?" she said, "no, but we'll do a vaginal sonogram..have you had any bleeding or cramping?" i said "no" and waited in silence. finally, she said, "ahhh, there it is." which them led me to cry even more. i was exactly as far along as i thought i was. i was relieved but a mess. lol. i called justin and told him everything was okay, then i called my mom and just started crying all the drive home. poor henry had to be dragged along.

i spent the next two weeks trying to just relax and i had another sono yesterday. the baby is great! we saw it's heartbeat or i should say we saw a spot on the spot move. it's heart is strong and everything looked good. so again, i started crying in relief.

it's just hard this time around. with henry we were blissfully ignorant. not so much with this one. :) i'm not worried about having another child with ds or having a child with a different syndrome, issue, birth defect, etc. all i want is to have a child that can live a LONG, HAPPY, HEALTHY life- period. my worry is losing this child. all i have is henry. justin and i don't have a typical birthing story or a typical child. i worry that there is something different with either one of us that when our baby is forming it can't develop in a typical way. and develops in such a way that it can't survive and we lose it. that is my fear. something wonderful came out of having henry, but nothing wonderful comes out of losing a child.

also, i think some of my anxiety comes from simply having henry. his birth was tramatic. and that's all we know. it's kind of like when someone is in a bad car accident. the accident leaves behind more than just physical scars. you always have that trauma stored away in the back of your brain somewhere. and while we love henry to death and wouldn't change him in anyway...we still had a very hard beginning with him. so it makes you kind of gun shy. you know, are we ready to go through something like that again? obviously, we'd be more prepared if something didn't go the way it was suppose to. but i don't think you are ever fully prepared to have a child who's medically fragile.

and of course it's crossed our minds wondering what if this child does have down syndrome, or what if this child has a different special need. i would love it if henry had a sibling with down syndrome. i don't have a problem with having another child with a special need. but with the second child having down syndrome or something else, you have to think harder about having number three and so on. kids with special needs do require more time/money than a typical kid. so we would have more to consider when it came to expanding our family again...and yes, i would love to have a typical birthing experience. i don't want to be horribly anxious with every child. i'd love to have a child with no drama. in and out in two days. and i do want to have a typical child. i want to experience that, too. it's the experience i always thought i would have and there's nothing wrong with still wanting that. in my mind a perfect family would be two typical kids and two kids with ds...funny how i used to want two girls and two boys and now it's two typical and two special needs. lol. how life can change!

i'm not going to be okay until i hold this baby in my arms and know that he/she is okay. it also doesn't help that i've already had to dreams where i miscarry. so i've just been praying extra hard to this baby to be okay, but mostly strength to get through whatever we are going to be faced with in the next several months. we are not going to be doing any genetic testing. invasive test aren't something we're interested in and the sequential screening isn't 100% percent either way.

i will have a thorough sonogram to look for birth defects. we do want to be prepared for that and that's the most important thing to us. we will be finding out what we are going to have. it's either a surprise at 20 weeks or 40. i prefer the surprise to be at 20 weeks.

right now i'm a little more tired, not too bad. i have to remind myself that i can't turn or get up so quickly because i do get lightheaded and my balance is off. the only major pregnancy syptom i have is morning sickness. it's the same i had with henry. nauseous all day, everyday! luckily, i'm not throwing up. i hate throwing up, but then again i guess noone really loves doing that. i've tried peppermint and ginger and other things. nothing works so i just have to suck it up. it's not so bad that i want to get a prescription for it. i'm not a person who is very pro-medication, especially when pregnant...so i rather just grin and bare it. :) i have a lot of food aversions. no cravings. my diet consist of toast, pancakes, and crackers. haha. so nutritious. all i want is bread products. i think it's because i'm nauseous. my brain is programmed to crave carbs when my stomach is quesy. darn all those years of partying.

i just hope everything goes okay. i'm excited because i have a couple people who are close in my life, who are also having kids around the same time and it will be a lot of fun. i don't really have a preference on the sex. i'd love to have girl so i know i get my girl, because supposedly people in my husband's family do not have girls. but then again i don't think any of his uncles have had more than two or three kids. so if they each had like 12 kids and all boys, then i'd believe it more. i'm kind of leaning a tad towards boy. simply because i think it would be really great for henry to have a brother that close to his age. but either way works for me. well that's all for now. i have to make dinner.

i have a secret...

2010-02-09T13:08:00.002-06:00

doing the itsy bitsy spider...but that's not the secret

lots of emotions to share, but for now you get you get happy pics!!!!

autism awareness lovey

2010-02-05T18:12:00.001-06:00

moving onto my next lovey- autism awareness! you can get this lovey HERE!!!!!! DON'T FORGET, YOU PICK THE NAME AND SAYING OF YOUR CHOICE!

picture pick me up

2010-02-04T17:18:00.001-06:00

breast cancer awareness fleece lovey

2010-02-04T09:35:00.002-06:00

next new lovey. don't forget you can get any of the loveys HERE. All loveys are $12.99 plus shipping!

new swaddled in awareness product

2010-02-03T17:45:00.006-06:00

i will be switching things up a little on my etsy site with some new and different products. still will have animals and blankets, but you'll see as time goes on. and i'll explain more as time goes on. BUT for now i do want to introduce a new product line of loveys. These are so soft and cuddly. They measure 13x13 inches, so they are perfect to tote around. The first up is the Down Syndrome Lovey. Each day this week I will have a different one!!!

all loveys are made of anti-pill fleece, 100% polyester, and machine washable. All loveys are personlized with name and saying if you'd like!!!

you can find this item here.

we have sleep

2010-02-03T09:38:00.002-06:00

thanks to everyone for all the well wishes and prayers. we have had two nights of sleeping through the night!!!! *knock on wood* we are still not at 100 percent, but sleeping through the night is all i care about. i've realized that i have one basic human need this past week, it's not food, water, shelter, clothes, or even sleep for my sleep. my one basic need is that henry gets sleep so that i at least have a chance of sleep! :)

saving sofia....

2010-02-01T18:46:00.003-06:00

this little girl has a special little place in my heart. i have been to reece's rainbow many, many times and saw this little girl one day. i thought about how wonderful it would be if we could adopt her, but that's just not in the cards for us right now. i hope and prayed this little girl would be adopted. i don't know what it was about this little girl, but she caught my eye or i should say heart. maybe because she reminds me a little of henry or maybe because her name is sofia and i want to name my daughter that if i ever do have a daughter. but my prayers have been answered, little sofia is being adopted by the sanchez family. you can read all about miss sofia and how you can help bring her home here.

henry is gradually doing better

2010-01-30T23:39:00.004-06:00

we are getting there. yesterday was rough. he was pretty tired and crabby. today much of the same. fever is gone for the most part. he is still barely eating. good thing he has a lot of reserve ;) last night he woke up in the middle of the night again and i wanted to cry. i was feeling pretty bad myself...have been the past couple days. and well sometimes being a mom down right sucks. luckily, i have a wonderful husband who gave henry medicine and settled him back down. so i can't complain all that much. but it's not fun taking care of a child sometimes, especially a sick child, when you feel poorly yourself and aren't allowed sleep because of said child. :) but you do what you gotta do. i pray and hope tonight he sleeps through the night.

hopefully, next week is a much better week. *fingers crossed*

thanks for the well wishes from all and hopefully i can get some new pics of henry up soon.

doing a 180...

2010-01-29T11:53:00.003-06:00

henry was sick all day yesterday. in the afternoon he had a temp a little above 104. his temp is not coming down even after i gave him tylenol. first i want to say i'm a first time mom so i don't know what i'm doing....anyways, i gave him tylenol, ice water, and popsicles trying to get him temp down. nothing. call the doctor and speak with the nurse on call. she says to rotate tylenol and motrin every 3 hours. okay. so justin is on his way home and i call him to pick up motrin. the nurse says unless his temp is 105 and not coming down no need to visit the er. she tells me to give him a tepid bath. okay so i'm suppose to get a child who is going in and out of sleep and miserable a bath. awesome!

second, i want to state that i don't do baths/showers with henry. i just think it's weird...no offense to those who do, i just don't like it. but i know that henry is not going to sit in a bath by himself. so what do i do? put on my swimsuit and we take a long bath together. his body starts to feel cooler and it's working. this poor child is so pitiful at the time. he didn't want to move. he hated the bath but all whined when i said, "let's get out."

i get him out and put a t-shirt on. mind you i'm freezing-it's winter! haha. justin gets home, i give him ice cream and motrin. and not even kidding...probably with an hour or two he was a totally different kid. he was playing basketball with dad, rough housing. seriously? mom gets "i'm on my death bed" child, and dad gets, "party boy." is there any justice in this?

today his temp is down. still giving him medicine. he's definitely still crabby and not himself. i myself don't feel that great. hope i'm not getting what he has. maybe night we will all get a full night's sleep. that would be wonderful. i am soooooooo beyond happy that today is friday.

on a completely different side note...i just had to mention this because i was in shock. so i'm sitting in the waiting room at henry's therapy place while he is working with his therapist. this women who is already annoying me because she talking on her cell phone nonstop...gets off the phone and says in reference to her husband, "sometimes it's like he's retarded." or something like that. i couldn't believe it. it's not that someone used that word...it's simply because of where we were and she used it. i'm sitting there with two other moms that have a child with autism and this woman. i wish i wouldn't have been so caught off gaurd, but seriously? how dumb can you be to use that word in a place where there are all kinds of kids with mental/physical disabilities coming in and out. hopefully, she will say it again in front of me. this time i won't be so caught off guard. i just couldn't believe it.

sick days....

2010-01-28T10:32:00.003-06:00

henry has not been feeling well the past couple days. the night before last he was up all night with a fever. i took him to the doctor yesterday morning to make sure he didn't have an ear infection or the flu. his fever went away only to return yesterday afternoon. he has just a viral bug. this morning he actually ate something so that was good. he's relaxing on the couch watching sesame street.

he's acting better but still not himself. poor little guy. he was so tired yesterday he fell asleep in my arms at the doctor office.

we have officially switched parishes and have chosen the school we will send henry to. i hope it all works out. i'm glad that we found a catholic program for him. while it's not a deal breaker, i do prefer to send him somewhere that is our faith based simply because they do incorporate things we believe in. next friday the church is having a potluck for families with children who have special needs. justin and i plan on going, i just need to call about it. as far as the other church i am going to write a letter when i get some time ;)

oh, yesterday they weighed henry and he weighed 35lbs. sheesh, no wonder my back hurts all the time. haha.

and as i'm sitting here watching sesame street i can't believe they have the same adults. some of these people are really old and have had some work done. and what is up with elmo being the main show. what is it about his annoying little voice that kids love so much. i guess kids love high pitched voices. don't get me wrong i think he's cute, but half the time i can't even understand what he's saying. henry's 2nd b-day is actually going to be elmo themed. he's crazy about elmo!

not much going on...

2010-01-23T13:53:00.002-06:00

we are boring. sorry, just how it is. i'm trying to finish this book for henry. it has pictures of all kinds of stuff around our house, food he eats, family members, shapes, colors, etc. then under each picture i have the word and in the bottom corner the sign. that way we can look through it and i can sign the pics. i'm making it through blurb.com. i'm excited to be done with it. speech is our main focus right now.

henry is walking really well now. he's so darn fast, he's startled me quite a few times. and his favorite things now is climbing all over the couch. he's quite the daredevil.

next week we have a school to tour. i have a bunch of check-up appointments i need to make for henry.

on a side note, we switched our cable to at&t uverse and now we have dvr. our lives will never be the same again. haha. we don't want tv all that much i guess. mostly at night. well now i can record anything and watch something i actually like all the time. bad thing, i have to learn new channels. sadly, with our last cable i only knew about four channels and had to search for the rest. too many channels!

i want to thank everyone for all the supportive comments over the past couple weeks. i really appreciate it.

misc.

2010-01-17T17:54:00.004-06:00

for those of you who don't know...hgtv gives an amazing dream home away each year. they are doing it again and you can enter online once a day at enter here. and to check out the home you can go to its main site at dream home site. this year it is in santa fe, new mexico. you have until february 19th to enter. and just to let you know, you don't get any junk mail by signing up!

also, i am getting this really cool little magazine called prevention. i got it through my sister's school magazine drive. it has all kinds of tidbits of info. i will be sharing some here and there. so if you are looking for a new magazine to subscribe to, i would strongly recommend it. if you pick it up at the grocery store, it's a smaller size magazine in case you might overlook it.

looking around at schools

2010-01-14T16:28:00.003-06:00

i've been calling around at a couple schools for henry to start a mother's day out program, basically two days a week, 9 to 2. i've only had one bad conversation so far. and sadly it was the program offered by the church justin and i are parishioners of. i called and she told me all about the program and began to tell me that you get your child in on a point scale because "true parishioners" were not getting their kids in over i guess the "non-true parishioners." the point system was based on how much money you give, how much time you volunteer for different things, and how long you've been a parishioner.

i thought, "gee, that's a great way to get new, young families involved." i've never heard of that and it kind of ticked me off. so basically families that have a lot of money/time get their kids in. awesome! it's usually the younger families that don't have a lot of resources to offer up. even after that i was like, okay, whatever...let's move on. after she was all done i told her that henry had down syndrome and she immediately went, "ohhhhhhh." not oh, like OH! but oh like oh, that's no good. and proceeding to tell me in so many words that their program wouldn't be a good fit for henry. which honestly, pissed me off. i told her all about him. that he was not that delayed and that he walked early for having down syndrome. he plays and gets around just fine. at two, i'm sorry kids aren't doing a whole lot but learning some basic things, like sharing, no hitting, paying attention, etc. more or less at that age, it's socialization and playing. henry may not be able to do everything a typical two year old (i don't know what he'll be capable of in 8 months), but it's not like he would be totally lost.

the conversation was so unwelcoming that we're actually considering changing parishes. i just think that families that have children with special needs are the families that parishes should reach out to the most. or just any family that has special circumstances should be reached out to. and i know it's one person, but this person is chose to represent the church in a small way. and regardless of her uneducated opinion about henry, the whole point system is ridiculous. even my mom have never heard of such a thing. the conversation ended with, so and so will get in touch with you to talk about it more. yahhhhh, that person hasn't called yet and i won't be keeping my fingers crossed.

on a positive note.....today, justin and i visited a program at a different parish and they were very welcoming and didn't have any concerns about henry fitting in. when we toured the two year old room he immediately got down and couldn't care less if justin and i were there. he was playing with a car and a track. it was so funny, he walked over to this toy and knew exactly where to put the car to make it go. in my head i was going, "way to go henry, way to show everyone you are smart and know how to do things." haha. then he was chasing a little boy around. it also made me feel good when a boy came up to us and couldn't really speak. the school coordinator told me he's getting speech therapy. i was relieved and thought, "thank God, Henry won't be the only one who can't verbally communicate."

it was a really good visit and i asked them if they had any concerns or questions about henry and she said that he seemed to fit in pretty well in the two year old room and i don't have any concerns. we got to talking a little bit and she even told me that the families with children who have special needs actually get together from time to time and have a potluck dinner. i was kind of taken aback by that because that's the first i've heard of something like that from a parish. she said that we could go and check it out if we wanted! so needless to say that maybe this will be the new parish for us.

we will be touring another school next week and i want to get about three choices, just because of waiting lists and all that stuff. but i pray that the one we visited today works out. everyone was just so friendly.

christmas at great g-ma and g-pa's

2010-01-10T16:27:00.001-06:00

cool percussion set

rubber duckies don't go in there
my groceries, back off
hugs from cousins
henry LOVES these things. we have one he plays nonstop!
no pics from my extended family. i was christmas'd out by then. hope all of you had a wonderful holiday and a great new year to come!!! i know i'm looking forward to this year, i think it will be the best one yet!

christmas morning at g-ma & g-pa u.'s

2010-01-09T06:25:00.000-06:00

family tradition pic

family pic

very excited about new puppy, she had no idea
"you said it was mine!"

backhanding the puppy

new digs to wear to the games- go blues!

could it be....?

IT IS - ELMO!!!!! (mom's personal fave)

dancing in the kitchen, waiting for breakfast

now it's papa's turn

trying to get the new radio to work, guess who figured it out...me! haha

christmas at g-ma & g-pa b.

2010-01-08T12:09:00.000-06:00

"what did you get grandma?"

three cousins

paper is always better than toys

"any day now dad."
one of his favorite toys!

angry lil guy

rummaging in g-ma's cabinets

picking out a puppy for my sister

2010-01-07T06:55:00.000-06:00

christmas recap

2010-01-05T15:19:00.003-06:00

i have lots more pictures to post than the ones below....

but i thought i'd write about what we've been up to the past two weeks. we had an amazing time back in missouri with family. we had christmas eve with justin's family, went to midnight mass, christmas morning with my family, christmas afternoon with justin's mom's side of the family, and christmas evening with my dad's side of the family. it was a lot of fun and i loved watching henry fit right in. he definitely knows his extended family and is no longer shy around them. he picks up where he left off.

we had a TON to eat and played games. henry got a whole lot of toys. i just went through all his toyS and boxed up the old ones to make room for the new ones. we went to a dog breeder's house to pick out my sister c.'s present. that was a lot of fun and i have pics of that to put up. they had well over 90 adult dogs alone. all labs and golden retrievers.

justin and i got to go on a date. we ate out on "the hill" which is the italian area in st. louis. then we went to a blues game. i took my nephews, along with my sister a., to see the chipmunk movie. it was cute. i played the new super mario brothers a lot with my sisters and justin. it was addictive. went shopping, ate more, went out a couple times with my sister a., her boyfriend, and justin. we had an amazing new year's eve.

we stayed at a hotel in st. charles and hung out at a bar in the area. it was one of the best times in my life. we were telling people all kinds of stuff. one person was a blues player, justin was the ceo of something or other, one was this...one was that. we had a velvet rope cornering off our corner booth...people kept taking pics of us. it was hilarious. it's nice to go out and act stupid where nobody knows you at all, we partied like rockstars. haha. we were the fab five...i know we're nerds. i just hate to think of the pics people may have taken of us- yikes!!! the next morning we all sat around my camera and if you've ever seen the hangover it was just like in the movie. not as crazy...not even really close....but there were a lot of laughs and ewwws. luckily, we all still had our teeth!

it was a long ride home. we were exhausted. but we made it back safely and now i'm just getting to all the unpacking and cleaning up. it would be awesome if someone could do it for me. it's back to normal life and normal sleep patterns. oh, and if you want a fun board game to play....get "things." it can be pretty funny. but the all time family tradition is catch phrase.

it would be so nice to just sleep for a week. but henry is really a great kid. such a trooper. he just kinds of goes with the flow. and for the car ride my girlfriend let me borrow her dvd player that straps onto the headrest- HUGE DIFFERENCE! everyone traveling with children needs those things. i'll have more pics up later!

christmas at our house

2010-01-05T10:59:00.016-06:00

carrying on the family tradition pic

a boy and his vacuum
are you looking at me?
i want to be doctor

laying low
sibling love ;)
favorite toy from our christmas- see 'n' say

poor ellie ;)

finally home....

2010-01-04T23:27:00.004-06:00

let the pictures start....

the best thing about a bad day....

2009-12-17T10:34:00.004-06:00

....is that you go to bed and it's over! yesterday was definitely a bad day. when you wake up to dog throw-up everywhere you know it's probably not going to be one of you better days. and because of multiple things is was a rough day. but today is a new day and much better. i don't have a whole lot to do today which makes it even better. just one doctor's appt and that's it.

and perhaps one of the best things about having a child is that it's hard to stay mad or upset all day when you see them grin at you. the stress of yesterday had nothing to do with henry, but his smile can warm your heart.

random pictures

2009-12-15T16:03:00.004-06:00

hanging out in little santa ville

henry and santa

reindeer watching

family pic

new fun place to hang out in

lazy bums

3 hours later we have a new light

dsgd snack'in with santa

dsgd snack'in with santa

large order finally done! woohoo!!!

today's checklist

2009-12-15T08:29:00.003-06:00

i have so much to do today. i finally got an awareness buddies order done that i hope to drop off today. i have my house to get back into order. i need to get all my laundry done. clean bathrooms, dishes, etc. give the dog a bath, write christmas cards. i have lots of pics i want to post...all while making sure my one year old doesn't hurt himself. i think maybe i'll just go back to bed. ;)

on another note. we started henry's new therapy schedule and met his new speech therapist. she very nice and she seems very competent so we shall see. his new schedule is two days a week, with three half hour sessions back to back. i was worried how's he do with it being like that. but he didn't seem to mind and came out smiling as usual. so keep your fingers crossed.

why is it....

2009-12-11T16:00:00.003-06:00

...that toilet paper, paper towels, laundry detergent, and diapers all seem to run out at the same time? does anybody else notice this? i don't think it's a coincidence. :) not sure if it's at all targets, but at the target by my house- if you buy any two of certain sized items of bounty, charmin, downy, tide, and a couple other things...you get a $5.00 gift card back!

my son loves water...

2009-12-11T10:57:00.005-06:00

yes henry loves water. you know what has water in it- toilets! YEAH!!!! yes my loves is a toilet dipper. we've caught him several times playing in the toilet water. well today i'm trying to get the bills paid and i notice henry is being awfully quiet. so i turn and he's no longer in the living room. i find him in our hall bathroom and he has taken two toilet paper rolls out of the cabinet and put them in the toilet. and they were our last toilet paper rolls. seriously? ugh, such is the life of a toddler.

his other favorite thing now is throwing all his toys behind the tv cabinet. half his toys are back there now. at least you can't see them!

i also want to share some other exciting news. my brother p. is going to be a dad for the first time. congrats to you both, p. and l. i can't wait!

now i'm off to finish christmas shopping and buy groceries...maybe i'll just take a nap instead. ;)

it's the climb

2009-12-10T15:00:00.002-06:00

so i'm a miley cyrus fan....*pausing for laughter* okay....good. yes i like miley and i don't care who knows it. :) justin already makes fun of me. but i just downloaded a bunch of songs onto my ipod before we drove to stl for thanksgiving. and one of my favorite songs is "the climb," by miley cyrus. do i wish that the song was by someone older, perhaps wiser- yes...but nonetheless i feel like this song should be my current life anthem. i think not only are the lyrics especially meaningful, but i just love the instrument/melody as well.

click Here to listen. pause the youtube video up top first, then select the song on the song list provided.

The Climb by Miley Cyrus

I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa

all about school

2009-12-09T15:19:00.005-06:00

school has been on my mind a lot as well. we are trying to decide what we are going to do when it comes to school for henry. it has been a long process for us and our opinions have changed throughout the past 21 months. in the beginning we visited a school in Dallas. It is a great school. It is mostly for kids with special needs but there are some typical kids that go to it as well. both typical and kids with special needs are in the class together. therapy is also provided in the school. they even have music therapy. when justin and i toured the school we were blown away.

we thought this is the answer. it was what justin and i refer to as the silver bullet idea. this school was going to take care of everything. henry was going to excel and we didn't have to worry about therapy. at the time our mindset was, "we are going to make henry super kid with ds. we are going to make him typical." the school was everyday, all day. we thought this school was going to prepare him to be like any other kid.

well luckily he wasn't old enough at the time to go. because when we toured we were still at that "deer in the headlights" stage. but time did go on and justin and i started to really think about it...and think about the plans we had for henry before we found out he had ds. our plans were that he would stay home with me until preschool age and then we would look at a preschool or mother's day out part-time program. we began looking at the pros and cons of not just sending him to the school we toured but any school at that age. and quite frankly, we returned back to our core beliefs. i wanted henry to be home with me. we make the sacrifices and we feel that any of our children need that security and one on one time with a parent for the first few years of life.

i don't care what type of disability any of our children have. i really feel those first few years are important for our kids to be home. i know some of you differ in your opinion and i understand completely. that's one of the great things about having henry. we've met so many people walking different paths and it's helped us find our way. there have been so many times when i've thought, "i've never thought of it that way" and your opinions change and you can make better decisions for you own family. EVERY FAMILY IS DIFFERENT AND EVERY FAMILY MAKES DECISIONS THAT FIT THEIR GOALS, LIFESTYLE, AND NEEDS. that's my disclaimer ;) i wanted to give henry that chance to just be a baby and just be a little kid. i personally don't feel it's necessary to get him started in school so early. i just don't. and i don't feel that started him early will give him a huge advantage in the long run.

and there were some things about the school we didn't like. therapy was not one on one, it was all day/everyday, it was a huge commute, it was mostly kids with disabilities, and well it costs a lot. the shininess of the school started to wear off. we realized it was simply one of many great schools, not the cure-all and not something that fitted into what we wanted. which honestly sucked. because we were sold at day one, wanted the solution, and now we had to look at different paths. and for a long time i felt guilty for not sending henry to school. a lot of parents of kids with ds sent their kids to school early. i felt like i was being a bad mom. but i knew what i believed and that's that. and at the time i so wanted the silver bullet. i so wanted the cure-all. it was a rough time.

time went on and we still needed to decide what exactly we were going to do. we still wanted to find the BEST school so that henry can be just like any other kid. it's a lot of pressure. you hear stories of 20-somethings with ds who have jobs, get married, drive, live independently...and you are like, "okay, what did their parents do? i'm going to do that with henry." i used to get so stressed out about school. i wanted to put in a,b,c and get x,y,z. well you can't do that. you can't do that with any kid. and as more time went on i began to realize a couple things.

henry is going to be henry. all these stories you hear about adults with ds living independently and doing well...none of them followed the same path. some of them had a lot of school/tutors, some didn't have so much, some did this, some did that. there is no one set path. and it just kind of dawned on me one day. these adults might do really well because that's who they are.

i think a child, any child becomes who they are because of mostly genetics. yes environment factors do play a part. but quite frankly i'm not worried about environment factors. (henry will have a loving home, a good education, and lots of support). look at all my siblings. we were all raised pretty much identical, but we are all so very different. i believe base intelligence is kind of genetic. and i think personality is a huge part of it...which is also genetic. henry will be who he will be because of his genetic make-up. yes i will still make sure that he gets a great education, and that he is pushed, motivated, supported, etc. i do think a person can always improve themselves and continually learn but there is only so much you can put on a kid's plate. you can't force a child to be something they are not. ya know, one of my friends all through school was the top of our class. straight a's all the way. and her parents really pushed education. she got a scholarship to college and well she ended up taking 8 years to graduated with just a bachelor's and does a job anybody can do, even without a degree. how many people do you know like that? i know quite a few. and then i know kids who were middle of the road kids school wise but who have done very, very well for themselves job wise. people pick their own paths.

i think education is very important but i don't think it's the deciding factor in who henry will be or what he will be capable of in the future. and i've quit stressing so much about finding this perfect school. i will put henry in a great school and take it year by year. and if he needs extra help then we will get him tutors so that he can progress throught grade levels. but the idea of a school making henry successful in life is just not realistic. it will be his personality and his own abilities. will he be driven? will he like school? will he be outgoing? will he be inquisitive? will he like reading? will he be able to process certain school material easily or will he struggle? to me, education is just one part of making an adult who they are. every kid needs a solid education, but it's not fair to try to change henry or put extra pressure on him. he is who he is. and we will grow and change with him. if he can't live on his own as adult, he can't. that's just how it is. i want him to be as independent as possible for both of our benefits...but there are no guarantees with any child.

next school year we plan on putting henry in a part-time pre-k/mother's day out program for mostly socialization. my biggest concern is just finding a school that wants him and will support him. and something else to keep in mind. just because a school is known to be top-notch academically doesn't mean that it's top-notch for a child with special needs. and vice versa. i've had moms tell me about schools that aren't in the best school district but have excellent special needs programs. it's all a learning process and we will figure it out. trial and error. you can always change schools. and quite frankly that's our plan. just pick a school and give it a go. justin and i have a lot to learn about school and we are slowly learning about ieps and all the tricks and tips. but i've just quit getting so stressed out about it.

year two...just a boy

2009-12-08T11:41:00.003-06:00

i've been thinking a lot about henry lately and how much he has changed this past year. the first year of his life was down syndrome year. a year of learning, coping, understanding, embracing, fearing down syndrome. it was a year of surgeries, tears, pain, heartache, facing your own doubts and demons, conquering odds, new definitions of normalcy, new life, new goals, and awareness. it was without a doubt the hardest year of mine and justin's life. i've talked a lot about how henry has changed our lives and made us strive to be better people so i won't get into all that mushy stuff ;)

what i want to talk about is his second year of life. a year of seeing henry as just a boy. when i first had henry i had some pretty bad images of what life was going to be like with a child who has ds. and even now i don't know what the future holds for my son. nobody has that ability for any child. but had i been able to see into his second year of life from day one, it would have made a lot of those initial fears vanish. this year was a year of chasing the dog, tidal waves in the tub, chasing anything that moved (mostly the dog again), throwing tantrums, getting into the toilet, pulling all the clothes out of drawers, walking, kicking the ball, first words and signs, kisses and hugs, cheeky smiles, playing ball, spitting, getting into the dog food/water, feeding the dog table food, laughing together, pulling all the pots/pans out of cabinets, dancing, and so many other things.

when i look at henry i think a couple things- mean little booger ;), cute, and ALL BOY! henry is without a doubt just a boy. my life isn't really different from any other family with a 21 month old. and in that first year i would have never of guessed that this year would be this "normal." i thought my life was going to be therapy, doctor visits, constant struggles/worries, surgeries, etc. i didn't know and i couldn't see that far. i couldn't see just henry in the very beginning. and all that emotional junk, it was all me. and everyone goes through it. it's the way it is. but henry didn't/doesn't care. all he cares about is being a boy.

this year has been amazing. i've seen henry change so much and do so many new things. it's exciting. i have the privilege to see this little person grow and learn. i have the privilege of being henry's mom. God gave a great gift to justin and i. He trusted us...He trusts us to do right by henry. and the best way that i know how to take care of henry, is to treat him as just a boy. give him a home, love, support, education, an allowance, rules, structure, hope, encouragement, clothes, toys, options, dreams, chores, lots of food ;), opportunities...get him involved in music lessons, sports, clubs...whatever it is that he thinks he will like. encourage friendships...maybe discourage certain friendships ;) teach him right from wrong, take him to church, bring God into his life, and no matter what keep telling him that no one can limit his abilities no matter the doubts justin or i may even have. i was never told i couldn't be something. i was never told no you aren't smart enough. you figure things out on your own, and henry will do the same.

latest awareness buddie - horse

2009-12-05T16:50:00.001-06:00

perhaps my favorite.....available in all awareness colors!!!!

i'm alive...

2009-12-03T14:43:00.004-06:00

haven't posted in a long while. i had a wonderful thanksgiving. i'm exhausted. all of us are. henry slept in until 10am the morning after we got back. i have been in a food como for quite awhile. we've had salad every night for dinner this week. i figure that will balance last week out. haha. i don't have too many pics. just some i took of henry with my dad one night. i enjoyed just being with my family. went out one night, stayed in st. charles with my mom, aunt and her three daughters for a little girls' get away, did some xmas shopping, my brother got me a snuggie!!! you have no idea how long i've wanted a snuggie. he also got ellie one, too. :) henry got his xmas present from uncle p. early. i got some new back tires for xmas. you know you are a grown up when you ask for tires and bathmats as xmas presents. so sad. on thanksgiving night we all had our dogs there. henry was on the floor with five dogs circling him. he had a blast just laughing away.

he got to spend some quality time with his cousins as well. he loves them so much. justin said he got right down from his arms and darted for them at g-ma's. they were excited he could walk. henry is now getting up without pulling up on something. he is now walking 100% of the time. henry and i are just trying to get back to our 'ol selves. it takes a lot out of us when we go back to stl. on the way there he didn't sleep at all. 10 hour car ride with no napping- YEAH! on the way home he slept quite a bit. for the next drive to stl my girlfriend is letting me borrow her portable dvd player for him. ours doesn't work anymore. so that should be a better trip. it really takes a week just to get back to normal. and no therapy this week. i always cancel it because i know he will be tired.

henry got a lot of cool toys for xmas last week. well he hasn't gotten them yet. i picked them out when i was with my mom. he is going to get a tickle me elmo live- OH MY GOODNESS!!! he loves it!!! i showed it to him and i sooo should not have. he cried when i put it back in the bag. i know, i know...mean mommy. i did some xmas shopping yesterday. i don't have much left. we usually wait until we get back to stl but this year i'm doing it ahead. when we wait there is nothing good left. just three people left and i know exactly what i'm getting them so that is good!

and how come henry showed no interest in the xmas tree when we put it up, but when we got back he immediately went for it and keeps messing with it. sheesh. the next couple weeks i'll be busy making some stuff from my swaddledinawareness site. which reminds me i need to send some emails back. i will also be getting things ready for just our xmas. i need to get henry some new tennis shoes. i guess i'll stop by the stride rite outlet store this week. i was excited that his peacoat from last year fit him this year. buying clothes too big pays off. lol. yesterday morning it snowed. yes it snows in texas on occasion. it was melted by noon, but nonetheless it snowed.

i have to send out xmas cards, too. i don't know if i want to send out the picture cards from walgreens or regular cards. i kind of want to do the picture cards but then i need to get a good pic of henry. maybe i'll do that this weekend. and why is it so cold all the sudden? anyone know where i can get a cheap fireplace screen. henry has always been interested in our fireplace. he likes the little rocks in it. so i need a screen if we are going to use it. i think i saw some cheap ones at lowes...have to go check that out. i'd like to have the one that is permanent and installed into place, and the doors lock...but those are a couple hundred bucks. so for now i just want the kind that sits in front of it.

oh and why do people think it's a compliment when they say. "well he doesn't really look like he has down syndrome, you know, some kids you can REALLYYY tell." what am i suppose to do with that? a nurse said this to me yesterday when i was getting a check-up for my thyroid. i was in such a pissy mood and tired...i just said yah and moved on.

getting gama's feet.

attacking ellie while giving a cheeky grin

wrestling with papa

proud to be in papa's chair

one last cheeky grin...yes this is what he does when you say "cheese!"

yesterday's snow

at the mcdonald's in vinita, ok. it's the mcdonald's that runs over the interstate. we've talked about going to it everytime we drive under it. well we did on the way home. NEVER, EVER go there. it's disgusting!!!!!

christmas tree festivities

2009-11-22T12:08:00.002-06:00

this saturday we had our "put up the christmas tree" day. our tradition is that we put up our tree, decorate it, listen to christmas music all night, and we have snack food night. we basically go to the frozen food section and get all the junk food we want- pizza rolls, jalapeno poppers, potato skins, i made mini pigs in a blanket, nachos, etc. it's quite the feast.

henry has shown a little bit of interest in the tree. we may have to barricade it somehow. mostly, he is more interested in the navity set..which isn't good because it's actually a really nice nativity set and one of the very few things i do want to keep nice. so we may have to find a different place for it. right now it's on the sofa table we have. here are some pics of the tree decorating

therapist change over

2009-11-19T19:51:00.002-06:00

so i mentioned that the pt from eci either quit or got fired. now henry's speech therapist from baylor is leaving and going somewhere else. i really liked both therapist and am a lot more upset about this than i thought i would be. i suppose because i know how hard it is to find a good therapist. the new pt from eci came out and well we'll see. i don't get that all "warm and fuzzy feeling." i have yet to see who will be henry's new speech therapist at baylor. i know who'd i'd like but the scheduling will have more to do with who his new one is.

i'm just so ready to the holidays and going back to stl. the past two weeks i've felt poorly. last night henry woke up screaming in the middle of the night and wouldn't go back to bed. so he ended up in our bed and none of us got any sleep. plus my coffee machine quit working this morning and i burnt my thumb. nothing major but just one of those days.

BUT i am looking forward to thanksgiving and christmas...and all the PIE!!! i love christmas. the decorations, music, family, food, cold weather, EVERYTHING. i just love this time.

new awareness buddie - puppy

2009-11-18T18:23:00.004-06:00

coming soon....awareness buddie - horse. i should have the horse done by this week!

and blanket ready to go....

walking around

2009-11-13T22:48:00.004-06:00

a little better

2009-11-12T17:13:00.004-06:00

i'm feeling a little better. still sneezing and i have a running nose, but no more headache pressure! thanks for all the well wishes. i didn't mention this because, well i don't like to advertise when justin is not in town. but yah, he wasn't in town this week so yesterday really stunk because i got no relief when feeling poorly. he gets home this evening, so i can get a little me time to feel better! a little update- henry is climbing onto couches/chairs now. and i forgot to mention the other day that when i had him outside with his push toy he took about five steps backwards! i was pretty impressed with that. in speech therapy he made the cow sound. and in case you were wandering he is still just down right mean ;)

shipped and ready to go....

the pressure

2009-11-11T19:17:00.007-06:00

my sinuses are going insane today. i feel like crap. sneezing nonstop, sinus pressure, running nose. it hurts! blah!!!

all about henry

2009-11-10T12:30:00.005-06:00

life is always all about henry ;), but yesterday i made a point to make it all about him. it just seems that we've been so busy lately and especially after the full weekend we just had we needed some down time. well not really down time, but time for henry to have my undivided attention. so yesterday we took a walk and ended up at the local playground. he loves going there. he likes to swing, play in the mulch, and climb around. we stayed there for quite a bit and then came home for lunch and a bath. afterwards he took a nap and we did have therapy to go to.

after therapy we came home and spent the rest of the day outside, him and me. i brought out one of his balls and his musical walker toy. he had a blast pushing the walker all around the sidewalk and the street. kids were outside playing and they'd come over and talk to him. he was watching all of them zoom around him. our street is not at all a busy street so there are kids always playing in the street and i had him out there walking around, too. you could just tell he loved the freedom of walking with nothing in his way. he was so excited.

there were also a couple boys playing basketball at the end of their driveway and henry wanted to get right in the middle of them. he was getting really mad at me when i would redirect him. we eventually winded down and sat outside for awhile at the end of our driveway watching to kids play. we both had a great time just hanging out. no running around, no busy work, chores, errands, etc.

we then came in and had dinner and played on the floor together with ellie before bedtime. with the holidays right around the corner, and cold weather to come soon. i plan on making the most of this nice weather with henry. the holidays are always so hectic for everyone. for us, it is a little more crazy because we usually travel back to stl. and everytime we go back to stl it is nonstop go, go, go. can you believe that thanksgiving is only a little over two weeks away? i think the older you get, the quicker time goes by. i don't even know what happened to october.

and i'm seeing all the christmas commercials and merchandise. it is no way feels like holiday time. but i know it will be here in the blink of an eye. and the idea of henry and a christmas tree just makes me cringe. anybody have any good ideas how to keep your child from terrorizing the christmas tree?

some updates: his walking has come a long way in the past two weeks. he's not taking steps, he's walking. we no longer count steps. i've been making him walk a lot more when we are out and about the past few weeks and i think it's made a big difference. when we go to a store or therapy, he holds my hand and we walk from the car to the door. sometimes he won't do the whole way, but at least he's doing part of the way. for one thing, he's just getting too heavy. henry is a solid kid. in therapy he said "ca" for car. and made the vroom, vroom noise.

also, when justin's parents were in town. g-pa b. had some soda. henry was trying desperately to get it and we were all telling him no. so henry all of the sudden says, "no, no, no" and shakes his head no. it was so cute!

2009 buddy walk photos

2009-11-09T10:39:00.017-06:00

yesterday was our local buddy walk. it was a beautiful day and we had a great time. justin's parents came down to be with us as well! our team was one of the top three fundraising teams. we got our names announced and got to come up on stage to receive ribbons. it was pretty neat. we also had our own little sign along the walking path. only the sponsers and top teams got a sign. we were pretty pumped and beaming. it's about the little things in life :) and it was all possible because of our donors' support and generosity. we are so blessed and lucky to have so many wonderful people in our lives!!! here are some pics from the day.

the star of the day!!!

come on, right now?

2009-11-07T13:41:00.002-06:00

justin noticed today that i need new front tires. the tread had worn all the way down to the metal wires in areas. super. does anyone else hate spending money on crap like this. yes i know it's a cost that happens once in a great while, but right now...come on. so he took my car to the tire place and got two new front tires. the guy said that i really need new backs ones, too, but they aren't as bad as the front so i could wait a month or two. four tires, nice little $500 dollar surprise before the holidays- yeah!!!

the bright side, glad he noticed because they were really bad and i would have never noticed. safety first! lol

busy day

2009-11-06T22:19:00.002-06:00

today...

- woke up - that's always a good sign
- made breakfast for henry and i.
- paid bills - yuck
- quarantine henry in the family room with toys
- clean bathrooms
- play with henry.
- put henry down for a nap - wish i could take one, too
- fold clothes
- iron pillow cases for upstairs, and make bed - i love ironed pillow cases
- dust, clean all bedrooms upstairs
- get henry out of bed, make both of us lunch - cereal (don't judge me, i need to go to the grocery store)
- start to vacuum upstairs and steps - something is wrong with my vacuum
- take vacuum apart and get out instruction manual. find out that vacuum has a filter under the main filter that should be cleaned at least every six months. have had vacuum for almost three years - yikes!
- finish vacumming as henry chases it around
- justin comes home from work a little early. get ready to go to dinner
- take ellie to the groomers in petsmart, look around at cats and fish with henry (sorry justin but we will have a cat one day...you forget that you admitted to me after a few drinks that you are not allergic to them, you just dislike them) - check
- go to chick-fil-a because friend is having fundraising event there for buddy walk. i love chick-fil-a.
- take henry to get haircut. always interesting. takes three people to get the job done.
- go grocery shopping to kill time before picking up ellie
- pick-up ellie, justin gets into the car with her and she looks bizarre. can't understand why groomers always cut her weird. why would i want a shaved down dog except her ears and tail?
- pick-up prescriptions on way home. talk to mom as driving home.
- get home, unload groceries. trim ellie's ears and tail to look right, while justin gives henry a bath.
- play with henry (video to come later)
- put henry in bed - ahhhhhh.
- check emails, surf the net a little, write this post
- change out laundry, take a shower, and go to bed!!!! did i get the mail in today?

d'oh!

2009-11-06T11:35:00.002-06:00

i'm really saddened that i have had to take the ribbon tags off my blankets. apparently the idea of having ribbons around a blanket is patented. i received an email from the company yesterday. I would have never of guessed that in a million years, but I guess anything can have a patent. crazy. the patent is specific about how the ribbons are sewn in so maybe i'll find a different way to put them on or leave the blankets without the ribbons. The company actually rewards people for finding anyone who is in violation of the patent and "turning them in." oh well, live and learn. i still love my blankets and think they are beautiful, ribbons or no ribbons.

a little update

2009-11-05T10:47:00.012-06:00

we are doing good. this weekend is our buddy walk! i am really excited about it. justin's parents are coming down and we should have a few more people walking with us as well. our team is actually in the top 3 fundraising teams. justin and i are really excited and feel so blessed that we have so many wonderful people in our lives that care about henry and kids with down syndrome. we have raised around $4800. that is about $500 more than last year and we have actually had less donators this year. We really didn't think we would come close to last year because of the economy, but we were wrong.

We've done this two years now. And it really is a humbling experience. Words can't explain how we feel by the generosity of our donators. I look forward to the time when Henry understands what is going on and can be a bigger part of the Buddy Walk and his team. I look forward to the time when he understands how many people care about him, even people he has never met before. His life has touched so many people and as his parents, we have the privilege of having so many people touch our lives in return.

In other news...Henry is walking more and more. I'd say he's walking at least 50% as his mode of transportation. You can tell he feels a sense of accompolishment. Even when we try to hold his hand to walk he doesn't want to hold our hand. He wants to do it on his own. He has always been very independent and head-strong. I think that has been the biggest key in his milestones. He has re-found his interest in books. He now say bu for bubbles, pop, and this. He is constantly handing us things saying "this, this." It's so funny. And he LOVES baths. justin and i can't even say bath around him anymore. He hears it and immediately says, "bath, bath" and gets mad if you don't give him one. He's identifying objects more and more and following direction a little bit more. We are working on pretend playing. Talking on the toy phone, playing with little people and animals, etc.

He likes to spit- YEAH! so excited about that one. He loves to swing and throws a tantrum when I take him out. Then throws another one when it's time to leave the park. it is fun watching him become more and more a little boy, but also sad that he is no longer a little baby.

***********************************
Breaking news. I just got off the phone with ECI and they advised me that henry's pt is no longer working for them and they are in the process of hiring a pt as soon as possible. And that today's appt and future appts will obviously be canceled until further notice. Hmmmmm. makes me wish i had saved the pt's cell in my phone. obviously it was an abrupt quit or fire. i'm a little bummed. i actually really enjoyed his pt and thought she was good. wells this just stinks. this would really suck if we only did eci. and of course i won't find out what really happened from eci....hmmmmm. interesting.
***********************************
lastly, shipped out yesterday for a little girl...hope they love it as much as i do!

Awareness Buddie - Monkey

2009-11-02T18:42:00.000-06:00

halloween 2009

2009-10-31T22:57:00.015-05:00

hurricane henry and awareness buddies

2009-10-29T22:28:00.012-05:00

hurricane henry hit today while mom was trying to piece together her first awareness buddie. and this is actually pretty good compared to other times. i'd say this is a cat 3.

i have got to wash the pillow cases.
*************************************************
i love my first awareness buddie. the monkey will be available by the end of this weekend and will come in a variety of colors! this special little monkey will go to my little sister who happens to have juvenile diabetes. she's 15, but hey...who wouldn't love this little monkey?!

pumpkin patch pictures

2009-10-28T22:08:00.011-05:00

goals for today

2009-10-26T10:45:00.003-05:00

well i have my bathrooms, kitchen, and family room clean. i need to do more laundry, vacuum the bedroom, take henry to therapy, go to the fabric store, and i hope to make two...maybe three blankets tonight. we'll see. my next blankets are going to be juvenile diabetes and adoption awareness blankets.

if you haven't noticed some of the kids name i've used on my sample blankets have been kids i'm met or gotten to know via blog world. henry isn't my only inspiration. there are so many wonderful and strong families/people out there that have touched my heart through hearing their life journey and getting to know them.

on a different note...is there anything better than being the first one to use a clean shower?

perhaps my favorite blanket yet!

2009-10-25T15:38:00.004-05:00

you can get it here ---> Swaddled in Awareness

moved post from sewing blog- new blankets

2009-10-24T21:37:00.007-05:00

AUTISM AWARENESS

LEUKEMIA

BREAST CANCER

DOWN SYNDROME

DOWN SYNDROME

moved post from sewing blog- awareness buddies

2009-10-24T21:37:00.002-05:00

along with making blankets...which i will DEFINITELY have more fabric options as time goes on....but back to my point! i am making awareness buddies- a variety of stuffed animals that will be in cause colors and will also be monogrammed. right now i'm just working on putting together some with scrap material. i'll post some pics up later to show some of the animals!

moved post from sewing blog- first quilt sold

2009-10-24T21:36:00.001-05:00

I am very excited. this past week i sold my first quilt and i actually know the family it went to! it is a fellow blog friend,lisa and finnian from my other website henry's mommie. i was so happy it went to a family i actually know. making a quilt involves a lot of time and care and giving it away is somewhat sad, especially when you want to keep it for yourself! ;)

there is going to be a lot of exciting things coming to this site!!! this coming week i will be getting the most wonderful gift i have ever gotten and it is going to help me expand so much on everything i want to do.

moved post from sewing blog- first quilts - down syndrome awareness

2009-10-24T21:35:00.000-05:00

moved post from sewing blog- why?

2009-10-24T21:33:00.000-05:00

why?

i have learned a lot from my son, henry. but perhaps the greatest gift he has already given me is acceptance. i can not begin to put into words how having a child with a disability opens up your world to so many amazing and beautiful things. i have met so many people walking so many different paths in life. i have learned to NOT look the other way. i have learned to reach out no matter how scary it may seems at times. i have learned that you can not judge a book by its appearance. i have learned that a child with special needs teaches you more than you will ever teach them, and that they give back to society much more than you will ever know.

shortly after henry was born and we accepted our unexpected path we wanted to meet new families facing hurdles we lept over, or maybe just flat out knocked down. we wanted to give support and love. our path is not easy by any means, but it is worth it and we wanted to tell others our story. we want others to see how it's not what you think and it's going to be okay. because honestly, that's all you need. you need someone to show/tell you IT'S GOING TO BE OKAY.

so how does this all relate to my quilts? i have no clue! haha. but, no...really...i wanted to come up with something that was beautiful and warm. something of quality that would last for many, many years to come. i wanted to make something special just like all the children i have met. i wanted to make something that would be of comfort to kids who may not always have it the easiest...but i also wanted to make it promote awareness. i want people to stop and ask "who made that" or "where did you get that," and be a conversation starter perhaps. i want people to show that they are proud of their child and that the challenges they face are not something to shy away from. i want people to be advocates themselves...to show others they are not alone.

i also will be donating a portion of the proceeds to local non-profit organizations of the buyer's choice. this is really important to me. i think we all need to do our part no matter how big or small we can give back.

lastly, i have seen so many blankets on the market that have taggies, have different textures, make crinkling sounds, etc. what a great idea, especially for kids with down syndrome or autism who make need extra sensory stimulation. all kid products are meant to motivate and stimulate and i wanted my quilts to do the same. so i have several different textured fabrics in each quilt, along with ribbon tags to pull, chew, and clip toys onto!

and so that is why, that is the beginning.

one blog

2009-10-24T13:04:00.001-05:00

so i've come to the conclusion i can't do two blogs. so all my sewing stuff will be on here to and i'll just label it right. so i'm going to move my posts over...

the last thing i want to be doing right now

2009-10-23T16:37:00.002-05:00

...saving all my documents/pics to cd's because my computer keeps crashing and i think it's on it's way out!!! yeah me. seriously this sucks...i've already spent two hours at this. i suppose it will be worth it when it finally does crash and i have all my stuff.

there aren't enough hours in the day

2009-10-23T08:49:00.002-05:00

this week i actually feel like i don't have enough time. so i must choose doing things i want to do or sleep. i opt for sleep. i'm a **tch when i don't get enough sleep, mostly because i get migraines. well i guess i'm compromising with myself. i just go to bed a little later than normal. i need to remind myself- patience.

i want to catch up on emails and stuff today. henry is doing good. he's been sick the past week or so. i think it's mostly allergies because it's clear mucus coming out. he's just been a little more crabby than usual. he's saying "up" now. not sure if i already said that. he's also taking about 20 steps and doing well with walking around stuff and maneuvering. he's finally clapping. yes-clapping. he would never bring his hands all the way together. i have no idea why. he would make the motion of clapping...just wouldn't follow all the way through. the first time he did it, it was so funny. he clapped, looked at his hands, then did it again and laughed. he's very proud of himself now when he does new things. he's a goof.

a couple things- the other day i was checking out again at kroger with a much better experience than the woman who said "poor baby" when referring to henry having ds. there was actually a girl probably 16, 17. she kept looking at henry and finally said he's so cute. and kept saying it. she was a little shy but finally said "i have a brother with down syndrome". i asked her about her brother and she was just beaming. as i was walking out i started to tear up. it just made me feel so good to see the girl who's at that age when they are "too cool," to be beaming about her younger brother with ds. you could tell she really loved her brother.

the other funny ds moment. justin was out of town on business and a woman in the office that he was working at saw a pic of henry, and asked justin if his wife was "asian?" i thought that was pretty funny.

what else...we went to a pumpkin patch this past weekend. i'll have to get some pics up. they had a petting zoo and henry loved the animals. i think he needs a goat! haha. this weekend i hope to take henry to a halloween festival. we'll see. he still doesn't have a halloween costume. i'm debating on buying one versus making one.

what are all of your kids for halloween this year? maybe i'll steal your idea if you don't mind.

i guess i better go.