Thursday, November 15, 2012
Favorites
Some of my favorite pics from the last few weeks... {BTW, being away from Facebook is amazing!}
Thursday, November 8, 2012
And... I'm deactivated.
"Why is this such a saga, Adrienne? It's just Facebook." {repeat, repeat, repeat}
Ok, time to snuggle my little grouch!
Wednesday, November 7, 2012
Major withdrawal {Already, and I'm not even off yet }
I think I'm getting hives.
My cortosol levels are rising and my belly is bloated. {Could be the muffins I'm scarfing, but whatever.}
Bacne is back! {D'ah! I'm in a wedding this weekend!}
I'm freaking out!
8 years! My marriage with Mr. Facebook (Mr. F... Big) has lasted a solid run and my feelings towards him has become toxic. These feelings have been bubbling beneath the surface for awhile and now I'm telling him, "No more!"
No more.
NO MORE??
Wait, WAIT... Really?
Ugh. Yes. Really.
One solid month without good ole reliable Mr. F. My milk to my Cheerios, my Frosty to my McDonald's fries, my ketchup to my ketchup. Yes, you read that correctly. { Cue sappy mini violin melody. }
It's only a short breakup you see. I have everything under control. Like any addict, I tell myself I don't have a problem. I couldn't admit that I had a problem until I sat back and thought about my life. Every time I experienced something ( heartache, happiness, frustration, gas) the first person I wanted to tell was Mr. F. The thought of not sharing my inner thoughts and flatulence with him is anxiety inducing to say the least. It's gotten to the point that I tell Mr. F before my other man.
"Didn't you read on the Facebook invite anything about Wes's Buddy Walk? You were invited. You are his father."
Yes. That really happened.
So anyways... I'm in a state of disbelief that I am ending my near-decade long love affair, even though it's just for one month. It's grossly tragic, yet exhilarating at the same time.
I dread not knowing when I miss a birthday, marriage, baby tooth, etc.
I hate not being up to date on the mundane day to day stuff.
I want to see your dog's / baby's pictures.
Maybe we can, I don't know ... talk on the phone?
Call me, maybe?
Friday{ish} is the day. Til when? December 8th.
Anti-social social experiment
I woke up this morning and thought to myself, "Self, I am sick of Facebook."
For real, I said that.
Honestly, I woke up thinking of the weeks of political rants, passive aggressive Facebook "likes" for either party and straight up obnoxiousness. Then yesterday I tried to have a little fun with facebook friends by replacing the word "vote/ voting/ voter" for "fart/ farting/ farter" on some status updates (on my wall) for a little kicks and giggles. All in good fun. In my good fun I apparently offended someone.
I was flabbergasted.
Flabbergasted because it's politics. It's not our kids being called the "R-word" or saying something about race, gender and/ or stereotypes.
Yea, right. It's like being friends with someone because they have the same hair color as you. It's a racket, I tell you.
So let's just call it as it is. My friends are my friends because I call, text, email them. Oh wait, and I see them in person. I associate myself with people who have similar values and that's just that. If you don't believe in evolution or can't laugh at a political goofiness in good fun, I really have no interest in furthering a friendship. Sound rude? Well then don't be friends with me.
By the way, did you know I have 340 friends? {sarcasm}
I guarantee that I am a nice person, but I am really not as tolerant as I try to be. My mouth filter is starting to break and I don't want to be "that person". So, my lack of tolerance is leading me to my anti-social experiment.
By the end of the week my Facebook will be deactivated {literally} until December 15th{ish} - willing I decide to come back. I am sure there are those of you who really don't care, and that's fine. We're just not close.
However, if you are interested in the real me - follow me on Blogger. You don't need to be a blogger to do so. You can get email updates and communicate with me via comments.
If you have my #, text me :)
If you have my email, email me :)
I am on Instagram at adrijoy83 {I can't quit all social media!}
I really value my friends and Facebook has made it too easy to take them for granted.
"Fun Fact": I have been on Facebook everyday (unless on a cruise) since 2004 when Facebook was only available to college students. We had to request our school to be added!
For real, I said that.
Honestly, I woke up thinking of the weeks of political rants, passive aggressive Facebook "likes" for either party and straight up obnoxiousness. Then yesterday I tried to have a little fun with facebook friends by replacing the word "vote/ voting/ voter" for "fart/ farting/ farter" on some status updates (on my wall) for a little kicks and giggles. All in good fun. In my good fun I apparently offended someone.
I was flabbergasted.
Flabbergasted because it's politics. It's not our kids being called the "R-word" or saying something about race, gender and/ or stereotypes.
I said the word FART!
This someone is part of the Down syndrome community that I became "friends" out of obligation.
Seriously, it's like, "Hey, our kids have Down syndrome, so we must be friends!"
So let's just call it as it is. My friends are my friends because I call, text, email them. Oh wait, and I see them in person. I associate myself with people who have similar values and that's just that. If you don't believe in evolution or can't laugh at a political goofiness in good fun, I really have no interest in furthering a friendship. Sound rude? Well then don't be friends with me.
By the way, did you know I have 340 friends? {sarcasm}
I guarantee that I am a nice person, but I am really not as tolerant as I try to be. My mouth filter is starting to break and I don't want to be "that person". So, my lack of tolerance is leading me to my anti-social experiment.
By the end of the week my Facebook will be deactivated {literally} until December 15th{ish} - willing I decide to come back. I am sure there are those of you who really don't care, and that's fine. We're just not close.
However, if you are interested in the real me - follow me on Blogger. You don't need to be a blogger to do so. You can get email updates and communicate with me via comments.
If you have my #, text me :)
If you have my email, email me :)
I am on Instagram at adrijoy83 {I can't quit all social media!}
I really value my friends and Facebook has made it too easy to take them for granted.
"Fun Fact": I have been on Facebook everyday (unless on a cruise) since 2004 when Facebook was only available to college students. We had to request our school to be added!
Tuesday, November 6, 2012
May I interrupt Election Day for a sec?
Apparently there's an election going on today.
*crickets*
So, to "lighten" the mood, let's talk about the man of the blog...
Well, today we got some fabulous news...
The results of the upper barium swallow study shows that Wes no longer aspirates! Woot! So that means no more xanthan gum bottles! If you haven't had xanthan gum, let me tell you - it's foul. It's like a science experiment in Wes' bottles. Slimy, icky, sticky... you should see what comes out - Oye! The best part is if I get a job, I will not have to spend ridiculous amounts of time preparing bottles every night. Pfew!{I will write the thickening recipe below if needed}
Wes also had his initial visit with the Trisomy 21 Center at CHOP. Basically, John and I are doing everything right! Wes is developing beautifully and shows few delays. Any delays are pretty minor and he will get there no matter what. The only thing we really need to do is set up OT.
Ok - now back to your election coverage.
BTW, if you think I'M sensitive about my son, you should see some people with this election. All I can say is, "Wow".
"Simply Thick" Recipe - 6 oz formula bottle
Honey Thick - 1/2 tsp Xanthan Gum
Nectar Thick - 1/4(i.e. 2/8) to 3/8 tsp Xanthan Gum.
Heat water in microwave safe dish for 30-45 seconds. This will be hot, but it is necessary to make the Xanthan Gum a thick consistency. Whisk in Xanthan Gum vigorously until gelled. Add 3 scoops formula. There will be bubbles, so if you can, let it sit before feeding. Use Y-cut nipple.
*crickets*
So, to "lighten" the mood, let's talk about the man of the blog...
Well, today we got some fabulous news...
The results of the upper barium swallow study shows that Wes no longer aspirates! Woot! So that means no more xanthan gum bottles! If you haven't had xanthan gum, let me tell you - it's foul. It's like a science experiment in Wes' bottles. Slimy, icky, sticky... you should see what comes out - Oye! The best part is if I get a job, I will not have to spend ridiculous amounts of time preparing bottles every night. Pfew!{I will write the thickening recipe below if needed}
Wes also had his initial visit with the Trisomy 21 Center at CHOP. Basically, John and I are doing everything right! Wes is developing beautifully and shows few delays. Any delays are pretty minor and he will get there no matter what. The only thing we really need to do is set up OT.
Ok - now back to your election coverage.
BTW, if you think I'M sensitive about my son, you should see some people with this election. All I can say is, "Wow".
"Simply Thick" Recipe - 6 oz formula bottle
Honey Thick - 1/2 tsp Xanthan Gum
Nectar Thick - 1/4(i.e. 2/8) to 3/8 tsp Xanthan Gum.
Heat water in microwave safe dish for 30-45 seconds. This will be hot, but it is necessary to make the Xanthan Gum a thick consistency. Whisk in Xanthan Gum vigorously until gelled. Add 3 scoops formula. There will be bubbles, so if you can, let it sit before feeding. Use Y-cut nipple.
Sunday, October 28, 2012
Buddy Walk! {Holy Anxiety!}
We had our first Buddy Walk today! The turnout was absolutely phenomenal, and I want to thank all of those who were able to join us on the walk and/ or made a donation to the event. I can't express my gratitude enough! I am hoping to get the totals soon so I can tell everyone in their thank yous :)
It was an emotionally overwhelming day. Though this was our third Buddy Walk this year, it was Wes' Buddy Walk! All I could think about what how awesome this was and how annoyed I was at myself for my high anxiety issues that totally overshadowed this awesome event. This is a whole other story. Bottom line: Girlfriend needs to be medicated around large groups.
In any event...
Enjoy the photos, and keep in mind that my husband was taking these photos and had them in tungsten lighting - oops! So, a little creative {unprofessional} editing on my part!
It was an emotionally overwhelming day. Though this was our third Buddy Walk this year, it was Wes' Buddy Walk! All I could think about what how awesome this was and how annoyed I was at myself for my high anxiety issues that totally overshadowed this awesome event. This is a whole other story. Bottom line: Girlfriend needs to be medicated around large groups.
In any event...
Enjoy the photos, and keep in mind that my husband was taking these photos and had them in tungsten lighting - oops! So, a little creative {unprofessional} editing on my part!
Buddy Walk Day
Forget you, Sandy - we're having this Buddy Walk no matter what!
Pictures to come soon!
Sunday, October 21, 2012
Friday, October 19, 2012
Feeding evaluation findings
On Thursday my mom and I made our way to CHOP to have his feeding eval completed. There is somewhat of a wait to have an eval, but when you say "Down syndrome" and "infant" in the same sentence, they tend to get you in fairly quickly - even put you on a waiting list. It was only a 2 week wait for us from call to appointment.
If you ever decided to do a feeding eval for your "being", keep in mind that the more specialists in that appointment you see, the more copays you have. This one appointment resulted in 4 copays. If you do no have Medicaid as a secondary insurance, man do these specialist appointments add up. {Especially when one parent is working.} We had an equivalent of 5 copays this week alone.
Fortunately, we have Medicaid for Wes. In Pennsylvania, there is a loophole where if you are born with Down syndrome, you automatically qualify for Medicaid regardless of income. Before getting your panties in a tizzy remember - my kiddo did not choose to have Down syndrome, and don't even get me started on that bull on me choosing to "not" have him. That's garbage.
So... secondary insurance is a highly appreciated {and needed} benefit for my son. However, there are 5 insurance providers that you need to choose from. Not all doctors accept these insurances, which becomes a BEAR when you are in need of a referral.
Like in our situation... Wes' pediatrician accepts our primary insurance - no problem - and we don't ever need referrals for our primary. However, with his secondary {Keystone-Mercy}, his doctor only accepts Aetna CHIP. Well, our Aetna choice is Aetna Better Health which is clearly not accepted. {CHOP accepts - I believe - all 5 of our options.} Since Wes' primary doesn't accept our secondary insurance, then NONE of Wes' copays for his CHOP specialists are covered. That means, secondary insurance is pointless if we don't change PCP's. This is frustrating and sad because our pediatrician was the first doctor to evaluate Wes. He just looked at Wes with nothing but love and care. He is a huge advocate for us. Ugh....
Anywho...
As usual, I lose my train of thought and ramble...
We were seen by a team consisting of OT, ST, Nutrition and a Doctor. There were two separate appointments done back to back. The first by the nurse practitioner and nutritionist. The second by the ST and OT. Finally, a one minute check up by his doctor. Yes, it was about that amount of time - that's a friggin' copay! D'ah!
Without going into the boringness of the 2 1/2 hour appointment, and how stinking cute Wes was when babbling and shouting {Woohoo! Baby boy can speak like a champ!} and how much I felt like a terrible mom {don't we all feel imperfect?}, this is what the team came up with:
Speech: Feed Wes straight forward, supporting under his lip to close mouth while swooping out and upwards. Stop unnecessary oral exercises because Wes has good tone. These exercises are bringing more attention to his tongue and other areas of his mouth which is causing more tongue thrust.
*** Hot topic of oral motor exercises... I will test this out for a week or two before I decide if I am going to drop it or not. Honestly, all this crap with his tongue protruding out happened when I tried to be super mom and shoving things into his mouth. We'll see! ***
OT: Get it! - Ok, I will! Fortunately Wes' 6 month eval is on Monday. Woohoo to more therapists in my home. {Sarcasm - but, I actually don't mind at all. I just know things are going to increase and add on} Also stated was to support his sides in his chair with a rolled towel and work on having him reach for things in a seated position. No prob, already doing that.
Nutrition: Xanthan Gum has killed babies in the past year. 22 to be exact. This is what I thicken his formula with. This is what ALL thickeners have in them. I'm screwed. I need to try oatmeal {again}. Last time he got red as a cherry, but that is not the reaction you receive when a child has Celiacs. I don't want a dead baby, so I shall try replacing oatmeal for Xanthan Gum for at least 2 bottles a day. Ey yiyi! Any who, we're doing another upper barium swallow study in November to see if he can retry thinner liquids than a honey consistency. Also, keep eating 24 - 30 oz a day and spoon feed twice a day. If I give him only 24 oz of formula, I need to give him a vitamin supplement. Umm, no thanks to supplements. Until Wes refuses food with his adequate amount of nutrition, I will not be pumping him with supplements. This kid already gets enough additives to his diet.
Doctor: "Wes has a chubby tummy - did he poop today?" me: "Yes, twice". This is where I begin to internally freak out about the Xanthan Gum affecting his gut. Oh, did I mention that ALL of September, this boy pooped via suppository. And, the problem with Xanthan Gum IS digestion issues, specifically NOT pooping. Yes, freaking out.
Ugh! Well, GTG - Someone is hungry and I need to make an oatmeal bottle.
Lovely.
If you ever decided to do a feeding eval for your "being", keep in mind that the more specialists in that appointment you see, the more copays you have. This one appointment resulted in 4 copays. If you do no have Medicaid as a secondary insurance, man do these specialist appointments add up. {Especially when one parent is working.} We had an equivalent of 5 copays this week alone.
Fortunately, we have Medicaid for Wes. In Pennsylvania, there is a loophole where if you are born with Down syndrome, you automatically qualify for Medicaid regardless of income. Before getting your panties in a tizzy remember - my kiddo did not choose to have Down syndrome, and don't even get me started on that bull on me choosing to "not" have him. That's garbage.
So... secondary insurance is a highly appreciated {and needed} benefit for my son. However, there are 5 insurance providers that you need to choose from. Not all doctors accept these insurances, which becomes a BEAR when you are in need of a referral.
Like in our situation... Wes' pediatrician accepts our primary insurance - no problem - and we don't ever need referrals for our primary. However, with his secondary {Keystone-Mercy}, his doctor only accepts Aetna CHIP. Well, our Aetna choice is Aetna Better Health which is clearly not accepted. {CHOP accepts - I believe - all 5 of our options.} Since Wes' primary doesn't accept our secondary insurance, then NONE of Wes' copays for his CHOP specialists are covered. That means, secondary insurance is pointless if we don't change PCP's. This is frustrating and sad because our pediatrician was the first doctor to evaluate Wes. He just looked at Wes with nothing but love and care. He is a huge advocate for us. Ugh....
Anywho...
As usual, I lose my train of thought and ramble...
We were seen by a team consisting of OT, ST, Nutrition and a Doctor. There were two separate appointments done back to back. The first by the nurse practitioner and nutritionist. The second by the ST and OT. Finally, a one minute check up by his doctor. Yes, it was about that amount of time - that's a friggin' copay! D'ah!
Without going into the boringness of the 2 1/2 hour appointment, and how stinking cute Wes was when babbling and shouting {Woohoo! Baby boy can speak like a champ!} and how much I felt like a terrible mom {don't we all feel imperfect?}, this is what the team came up with:
Speech: Feed Wes straight forward, supporting under his lip to close mouth while swooping out and upwards. Stop unnecessary oral exercises because Wes has good tone. These exercises are bringing more attention to his tongue and other areas of his mouth which is causing more tongue thrust.
*** Hot topic of oral motor exercises... I will test this out for a week or two before I decide if I am going to drop it or not. Honestly, all this crap with his tongue protruding out happened when I tried to be super mom and shoving things into his mouth. We'll see! ***
OT: Get it! - Ok, I will! Fortunately Wes' 6 month eval is on Monday. Woohoo to more therapists in my home. {Sarcasm - but, I actually don't mind at all. I just know things are going to increase and add on} Also stated was to support his sides in his chair with a rolled towel and work on having him reach for things in a seated position. No prob, already doing that.
Nutrition: Xanthan Gum has killed babies in the past year. 22 to be exact. This is what I thicken his formula with. This is what ALL thickeners have in them. I'm screwed. I need to try oatmeal {again}. Last time he got red as a cherry, but that is not the reaction you receive when a child has Celiacs. I don't want a dead baby, so I shall try replacing oatmeal for Xanthan Gum for at least 2 bottles a day. Ey yiyi! Any who, we're doing another upper barium swallow study in November to see if he can retry thinner liquids than a honey consistency. Also, keep eating 24 - 30 oz a day and spoon feed twice a day. If I give him only 24 oz of formula, I need to give him a vitamin supplement. Umm, no thanks to supplements. Until Wes refuses food with his adequate amount of nutrition, I will not be pumping him with supplements. This kid already gets enough additives to his diet.
Doctor: "Wes has a chubby tummy - did he poop today?" me: "Yes, twice". This is where I begin to internally freak out about the Xanthan Gum affecting his gut. Oh, did I mention that ALL of September, this boy pooped via suppository. And, the problem with Xanthan Gum IS digestion issues, specifically NOT pooping. Yes, freaking out.
Ugh! Well, GTG - Someone is hungry and I need to make an oatmeal bottle.
Lovely.
Wednesday, October 17, 2012
Tongue thrust is driving me bonkers! Help!
Ok, so Wes has started spoon feeding at about 4 months old. It wasn't until recently that Wes has really had tongue thrust issues while feeding. I've done everything I can think of and I can really use some Ds momma interventions!
Oral Motor Exercises:
I'm using these techniques that I found off of the Speech Mama: Down Syndrome page...
I am also doing what my ST suggests which is using the Nuk nubby brush and working on the tongue, cheeks, gums, and lips, as well as the palate massage and taps.
IDK - should I just stick with one?
Spoon Feeding Technique:
I do this:
The above pictures belong to Lila's mom Latricia. I do not know her blog, but I borrowed these from The Speech Mama for a visual.
Then the little booger STICKS HIS TONGUE OUT!
Then, I try feeding him putting the spoon straight into his mouth. That seems to work better, but my son loves his tongue more than anything.
I mean it! He grabs it, talks with it out, etc! This is all super new!
Look!
*Sigh*
I have a video as well! Once I can get Google+ to stop force closing on my phone, I will be able to upload it.
Again, help!
What have you done that's worked?
Oral Motor Exercises:
I'm using these techniques that I found off of the Speech Mama: Down Syndrome page...
I am also doing what my ST suggests which is using the Nuk nubby brush and working on the tongue, cheeks, gums, and lips, as well as the palate massage and taps.
IDK - should I just stick with one?
Spoon Feeding Technique:
I do this:
The above pictures belong to Lila's mom Latricia. I do not know her blog, but I borrowed these from The Speech Mama for a visual.
Then the little booger STICKS HIS TONGUE OUT!
Then, I try feeding him putting the spoon straight into his mouth. That seems to work better, but my son loves his tongue more than anything.
I mean it! He grabs it, talks with it out, etc! This is all super new!
Look!
*Sigh*
I have a video as well! Once I can get Google+ to stop force closing on my phone, I will be able to upload it.
Again, help!
What have you done that's worked?
Tuesday, October 16, 2012
There's been a lot of changes going on around here...
I'm back.
I'm not sure for how long, but at least for this instance I am back.
September was hard. October got a little better.
Wes was hospitalized... I became a complete shut-in because of this... some complete shit head troll wrote on my other blog nasty things about my son being defective (I have the capability of finding you and I will blast your city and street if it happens again)... my friend, who is momma to one of Wes' spring birth buddies, lost her husband tragically... It was just one thing on top of another, and I have the complete inability to not take on others' pain.
....
Wes was diagnosed with *significant* obstructive sleep apnea and he aspirates anything that is not thickened to a honey like consistency.
We were in the hospital from September 4th (date of sleep study) until September 9th. It was overwhelming, confusing and scary.
He stopped breathing at night.
He showed little signs of difficulties.
His Oxygen was at 67. It should not be less than 92.
His Carbon Dioxide was in the 70s.It should not be higher than 40.
Low oxygen input and carbon dioxide output = slow growth, headaches, sweating in sleep, low cognition, behavior problems, etc.
Wes is now on a BiPAP.
At first, we were frightened. I was frozen in fear that all I could do was do my best for Wes. Blogging was last on my mind.
Wes has changed.
He has grown... oh has he grown! In 5 weeks, my sweet love tips the scales at 15lbs, 10oz and 24" long! He's 5th% in height and 25th% in weight on a typically developing scale. Remember when he could barely gain an ounce? I do. That will never leave me.
He has....
Gotten his voice. Seriously... this kid is chatty, spicy, boisterous, funny, loud, and at times, grouchy! I love it.
Grown even more active than before...
Become a mommas boy...
There's so much. I want to catch up with you all. I just can't guarantee that will happen. Wes wants me all of the time. I love him so much, I can't say no.
....
I'm not sure for how long, but at least for this instance I am back.
September was hard. October got a little better.
Wes was hospitalized... I became a complete shut-in because of this... some complete shit head troll wrote on my other blog nasty things about my son being defective (I have the capability of finding you and I will blast your city and street if it happens again)... my friend, who is momma to one of Wes' spring birth buddies, lost her husband tragically... It was just one thing on top of another, and I have the complete inability to not take on others' pain.
....
Wes was diagnosed with *significant* obstructive sleep apnea and he aspirates anything that is not thickened to a honey like consistency.
We were in the hospital from September 4th (date of sleep study) until September 9th. It was overwhelming, confusing and scary.
He stopped breathing at night.
He showed little signs of difficulties.
His Oxygen was at 67. It should not be less than 92.
His Carbon Dioxide was in the 70s.It should not be higher than 40.
Low oxygen input and carbon dioxide output = slow growth, headaches, sweating in sleep, low cognition, behavior problems, etc.
Wes is now on a BiPAP.
At first, we were frightened. I was frozen in fear that all I could do was do my best for Wes. Blogging was last on my mind.
Wes has changed.
He has grown... oh has he grown! In 5 weeks, my sweet love tips the scales at 15lbs, 10oz and 24" long! He's 5th% in height and 25th% in weight on a typically developing scale. Remember when he could barely gain an ounce? I do. That will never leave me.
He has....
Gotten his voice. Seriously... this kid is chatty, spicy, boisterous, funny, loud, and at times, grouchy! I love it.
Grown even more active than before...
Become a mommas boy...
There's so much. I want to catch up with you all. I just can't guarantee that will happen. Wes wants me all of the time. I love him so much, I can't say no.
....
Tuesday, August 14, 2012
Oodles of Appointments for Poodles. Oye!
Let me first start out by putting your mind at ease and saying that Wes is doing great... he's healthy, gaining weight and sleeping very well at night. However, we're seeing a few things that are mildly alarming, especially when you put things into perspective.
Down syndrome perspective.
Many children with Down syndrome are born with various "defects" {horrible wording} which can be fixed by the glory of modern medicine. Heart, gastrointestinal, kidney... but again, these issues can happen to typical children too. "Our kids", well, they are just more apt to have mild to sometimes severe health concerns. Fortunately for parents in "our community", we know ahead of time. We pretty much have that crystal ball thing down. I know Wes has a 1 in 100 chance of getting Leukemia. Scary? Certainly. A surprise if it happens? Not really - mental preparedness is my game.
Paranoia is not.
Maybe I should be a little more paranoid, but the way I see it - getting all worked up about something will not make whatever health concern little man has go away. I mean, if I keep cool, Wes is cool. He feeds off of my worry and I know that if I can control my emotions, he can stay chill for his appointments, etc. {However, this is where sleep walking on my part sets in... I'm OK with that. Just make sure to hide any and all keys. Food too. Maybe credit cards... the cats - I have accidentally launched the cats... anyways}
To combat paranoia, I keep on top of things. {Well, I try to...}
I spoke with my good friend Diane today - you may know her - the awesome face behind the IDSC? Well, I talked to her about my doctor's appointment for Wessie today {I'm getting there, promise} and she was surprised by something... Wes never had an echo or EKG. Yea, never. Well, I lie, he HAD one the day after I found out Wes had a 1 in 4 chance of having Down syndrome - while I was 18 weeks pregnant. At the time his heart looked fabulous! But after he was born, nothing. Nada. The murmur disappeared in 24 hours and the only thing done for Wes was listening to his heart with a stethoscope.
"Adrienne, it's protocol for Wes to have his heart checked"
Man.
Until today I was living in my little happy Down syndrome bubble. You know, the bubble where nothing can harm you - no words, no health concerns, etc.
Well, except Wayne Brady who compared the one comedian to what Trig Palin will grow up to look like and the DB, no-name comic that used the term "Mongoloid child" on the Roast of Roseanne Barr. {Sorry Erin! I know you despise that word!}
YO WAYNE, WANNA BUY SOME BRACELETS AND REDEEM YOURSELF?
Honestly, I am surprised I haven't heard anything from Jane Lynch since she was the host. You know, being on Glee, having a sister, Cheerio and soon-to-be baby girl with Down syndrome on the show. You know, minor details. Episode "Cheesus Christ" talking to your sister on the show..."When you were a little girl, I couldn't protect you from the word". Yea. That's why I am a major B to anyone who says the R word, etc. I don't care what anyone thinks of me... {That episode made me cry... just sayin'}
I digress...
So, the point is {Yes, honey - I'm getting there} - I need to be proactive.
If I'm not, who is?
...
The low down...
Wes, since probably a month old, has been making this noise - like "swoop! swoop!" out of no where. We brushed it off as simply acid reflux, and we took care of it. The reflux is better and Wes is able to eat like a sumo wrestler, but the "swooping" did not stop.
It got worse.
About a week ago, John and I went to Hopewell Furnace for a little outing with Wes before it got hot. I made sure to keep Wes away from the smoking coal pit (WTH?), and kept him cool since it was bound to be a humid day. We were only there for about an hour - it was around 10am when it started - he just couldn't catch his breath! It was terrifying to say the least. I held him and calmly told him he was alright, but it just persisted and was followed by tears. He began to get grouchy and maybe a bit panicked.
I was getting panicked as well. Miss Cool as a Cucumber over here had to keep her composure. The only way to do that was to sit in the backseat with Wes and hold his hand.
He soon fell asleep, but I couldn't keep my eyes off of him my whole way home.
The day after it happened again. This time as the grocery store. I documented it on video, but unfortunately I am unable to get it from my Facebook to blogger.
That day I went to the pediatrician {after much prodding from the Ds community} and they hooked Wes up to an O2 monitor. What they saw that that he was ranging between 89-93 O2 level. What he should be is 95 or higher. {I could only imagine how this effects his O2 level when he has one of his episodes.}
Can I just say, Thank GOD for the Ds community!
In any event, doc said that I need to make an appointment with the ENT as soon as possible. So yesterday was finally able to get in touch with the nurses at CHOP on the phone. While on the phone Wes had an episode.
His skin turned blue below his lip.
Scary. But I didn't panic. {What's up with that BTW? Don't all mom's panic? Why don't I? I'm not cold or disinterested - I swear.}
I told the nurse what was happening and she said that if he shows signs of distress, go to the ER immediately. Fortunately, we did not have to go.
...
Today, Wes had his appointment and he was scoped. Not sure if you've ever experienced this, but the scope goes down the nose and into the throat. Obviously, Wes was not happy but it was a good thing to do. The doc noticed that Wes has some inflammation, which is pretty normal for a baby with reflux.
However.
Due to Wes's unexplained color change, and periods when he does not breathe, we've been set up for a few appointments.
Cardiologist...
Gastrointerologist...
Sleep study at CHOP...
Keep Poodles in your thoughts. Thanks =)
Down syndrome perspective.
Many children with Down syndrome are born with various "defects" {horrible wording} which can be fixed by the glory of modern medicine. Heart, gastrointestinal, kidney... but again, these issues can happen to typical children too. "Our kids", well, they are just more apt to have mild to sometimes severe health concerns. Fortunately for parents in "our community", we know ahead of time. We pretty much have that crystal ball thing down. I know Wes has a 1 in 100 chance of getting Leukemia. Scary? Certainly. A surprise if it happens? Not really - mental preparedness is my game.
Paranoia is not.
Maybe I should be a little more paranoid, but the way I see it - getting all worked up about something will not make whatever health concern little man has go away. I mean, if I keep cool, Wes is cool. He feeds off of my worry and I know that if I can control my emotions, he can stay chill for his appointments, etc. {However, this is where sleep walking on my part sets in... I'm OK with that. Just make sure to hide any and all keys. Food too. Maybe credit cards... the cats - I have accidentally launched the cats... anyways}
To combat paranoia, I keep on top of things. {Well, I try to...}
I spoke with my good friend Diane today - you may know her - the awesome face behind the IDSC? Well, I talked to her about my doctor's appointment for Wessie today {I'm getting there, promise} and she was surprised by something... Wes never had an echo or EKG. Yea, never. Well, I lie, he HAD one the day after I found out Wes had a 1 in 4 chance of having Down syndrome - while I was 18 weeks pregnant. At the time his heart looked fabulous! But after he was born, nothing. Nada. The murmur disappeared in 24 hours and the only thing done for Wes was listening to his heart with a stethoscope.
"Adrienne, it's protocol for Wes to have his heart checked"
Man.
Until today I was living in my little happy Down syndrome bubble. You know, the bubble where nothing can harm you - no words, no health concerns, etc.
Well, except Wayne Brady who compared the one comedian to what Trig Palin will grow up to look like and the DB, no-name comic that used the term "Mongoloid child" on the Roast of Roseanne Barr. {Sorry Erin! I know you despise that word!}
YO WAYNE, WANNA BUY SOME BRACELETS AND REDEEM YOURSELF?
Honestly, I am surprised I haven't heard anything from Jane Lynch since she was the host. You know, being on Glee, having a sister, Cheerio and soon-to-be baby girl with Down syndrome on the show. You know, minor details. Episode "Cheesus Christ" talking to your sister on the show..."When you were a little girl, I couldn't protect you from the word". Yea. That's why I am a major B to anyone who says the R word, etc. I don't care what anyone thinks of me... {That episode made me cry... just sayin'}
I digress...
So, the point is {Yes, honey - I'm getting there} - I need to be proactive.
If I'm not, who is?
...
The low down...
Wes, since probably a month old, has been making this noise - like "swoop! swoop!" out of no where. We brushed it off as simply acid reflux, and we took care of it. The reflux is better and Wes is able to eat like a sumo wrestler, but the "swooping" did not stop.
It got worse.
About a week ago, John and I went to Hopewell Furnace for a little outing with Wes before it got hot. I made sure to keep Wes away from the smoking coal pit (WTH?), and kept him cool since it was bound to be a humid day. We were only there for about an hour - it was around 10am when it started - he just couldn't catch his breath! It was terrifying to say the least. I held him and calmly told him he was alright, but it just persisted and was followed by tears. He began to get grouchy and maybe a bit panicked.
I was getting panicked as well. Miss Cool as a Cucumber over here had to keep her composure. The only way to do that was to sit in the backseat with Wes and hold his hand.
He soon fell asleep, but I couldn't keep my eyes off of him my whole way home.
The day after it happened again. This time as the grocery store. I documented it on video, but unfortunately I am unable to get it from my Facebook to blogger.
That day I went to the pediatrician {after much prodding from the Ds community} and they hooked Wes up to an O2 monitor. What they saw that that he was ranging between 89-93 O2 level. What he should be is 95 or higher. {I could only imagine how this effects his O2 level when he has one of his episodes.}
Can I just say, Thank GOD for the Ds community!
In any event, doc said that I need to make an appointment with the ENT as soon as possible. So yesterday was finally able to get in touch with the nurses at CHOP on the phone. While on the phone Wes had an episode.
His skin turned blue below his lip.
Scary. But I didn't panic. {What's up with that BTW? Don't all mom's panic? Why don't I? I'm not cold or disinterested - I swear.}
I told the nurse what was happening and she said that if he shows signs of distress, go to the ER immediately. Fortunately, we did not have to go.
...
Today, Wes had his appointment and he was scoped. Not sure if you've ever experienced this, but the scope goes down the nose and into the throat. Obviously, Wes was not happy but it was a good thing to do. The doc noticed that Wes has some inflammation, which is pretty normal for a baby with reflux.
However.
Due to Wes's unexplained color change, and periods when he does not breathe, we've been set up for a few appointments.
Cardiologist...
Gastrointerologist...
Sleep study at CHOP...
Keep Poodles in your thoughts. Thanks =)
Sunday, August 5, 2012
Happy Heart Day, Isabella!
While pregnant with Wes, I made many connections in the Facebook and Baby Center Down syndrome communities. Some parents were veterans of Down syndrome, while others were young, fearfully excited mom's to be just like me!
Brittany was one of those fearfully excited mom's that I met on a Baby Center board in January. She shared the news of her prenatal diagnosis how she found out that her daughter, Isabella, had Down syndrome. I was so drawn to Brittany, her story and her love for her unborn daughter, I just had to reach out to her.
Expecting a child with special needs can be a scary experience. Scary because of the intense love for that child and the need to do anything possibly for that child to thrive. The first question that arises is, "Is my baby healthy." That question out trumps any fears of future plans you may have for your child. {You soon learn that these "plans" cause unrealistic expectations for ANY child. Damaging.} During our pregnancies, we both had our emotional ups and downs regarding the health of our children. Though we were both ever exciting about becoming moms (#2 for Brittany), we were still scared of the unknown. The fears of heart surgery for Isabella, and possible surgery due to Hirschsprung's for Wes (he ended up not needing), kept us nervous and on our toes. However nervous we both were, it was beyond comforting knowing that we were just one message away from each other.
The morning that I had Wes, it was a flutter of updates and messages to family and friends. I was excited enough that Wes shared the same birthday as my dear friend Erin, momma to Grady, but then I got news that Brittany gave birth to Isabella that same day! Let me just say that April 23rd is quite the lucky day for us all!
This leads us to where we are today...
Little Miss Isabella had her heart surgery on Friday. Wes wanted Isabella to know that he was thinking about her, so he asked me to help him write her a message. {I think Wes has a little crush - she sure is a beautiful little girl!}
To keep up on Brittany and Isabella, check out her blog. She's been updating us on Isabella's recovery like a mad woman... like a momma in love with her little girl...
Thursday, August 2, 2012
Physical Therapy Phun #1
We've been working on physical therapy for awhile with Wes, but until recently it hasn't been anything "crazy". For those of you with infants with Ds, or any infant for that fact, here are some exercises that we've learned from our PT and the Gross Motor Skills for Children with Down Syndrome book that are worth checking out. There are also other PT exercises we do for his neck, but that is to loosen mild tightness due to the old way in which we fed Wes.
During therapy, Mommy started holding my arms under my body because tummy time became really tough for me. So tough, that I starting to fall asleep. I don't know - I can't remember? Anyway, the book told her that it was a good idea to hold my arms to increase my strength.
Yay! It's therapy time! Therapy time is fun (when it's with mom and dad) because we get to play!
During therapy, Mommy started holding my arms under my body because tummy time became really tough for me. So tough, that I starting to fall asleep. I don't know - I can't remember? Anyway, the book told her that it was a good idea to hold my arms to increase my strength.
When Mommy let's my arms go, I tumble over like a tree!
Uh-oh!
Yikes!
Another thing Mommy and Daddy like to do is sit me on the couch. The move my bootie so it touches the back, though I try and scooch down when they're not looking. (I don't really like sitting up yet.) Daddy read that this helps me strengthen my core and my neck at the same time! In this picture, Daddy is making funny faces at me so that I look up at him and don't drop my chin.
Daddy, you're so funny!
Can we stop now?
The best part of therapy is getting kisses from Mom and Dad. They want me to know how awesome I am doing!
The next therapy that we do is side lying. I don't like this too much when I do it on the floor on blankets. This feels pretty good on the couch! My parents want me to reach out to them or to a toy... I personally prefer to eat Percy's face off.
Finally we do shoulder lifts. Some parents like to pull their babies by the arms and lift them up, but I need to build up strength first. Mommy says that Hypotonia stinks like a dirty diaper. I don't know what Hypotonia is, but I'd rather not smell it!
Mommy and Daddy say that they're so proud of me every time I do therapy. It makes me feel special. I love it when they say, "Yay, Wessie!" It makes me feel like a rock star!
To thank my parents for therapy, I quickly messed my diaper and the goods went up my back, down my legs and into my toes. I even peed on Mommy! (Shh! So funny!) At least I got a bath! Boy, I love baths!
Until next time!
XOXO Wessie Poo (literally!)
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