Monday, November 10, 2008

getting to know you, getting to know all about you.

I was just wondering how many of you out there that check in on Alex, are mommies or daddies to a special someone. I want to know you better.
The comments are open to anyone, so would you please leave a comment, and tell me a little about your child. Age, diagnosis, (if you have one), and what state or country you are in. Just say "hi I am the mommy or daddy to a boy who is 1, diagnosis RTS, future plans: to change the world, from Illinois, USA" .......something like that:)

And if you aren't the parent to a special child (not that your child isn't special) say hi too, I want to know all of you.

I see all those red dots on my map, I know you are there..........

RTS parents I want to hear from you ......ALL OF YOU!

58 comments:

Sallie said...

Hi from north eastern NC. I'm mama to a dear 16 month old blessing of a girl. Other than being under three pounds at birth she hasn't had any health challenges. I have you in my google reader and check on Alex often. Thanks for letting us share your joy.

Susie said...

Hiya! Susie, Momma to Joshua - born with a severe neural tube defect that made him a very special needs child indeed - still his momma, even though he's not here anymore.

Future plans: to support families expecting a special baby - whatever that means. While I don't understand getting up in the night to do tube feeds, and worrying about g-tubes, specialist doctors, and severe development delays - I do understand the loss and the atrocious things people say and don't say to people like us. :) You're on my google reader Jessica, and I love seeing Alex every time you post. I'm thinking of you and as much as it doesn't count - I support you in everything you do! You are amazing (even when you don't feel like it!).

It's all about doing the next thing in front of you, isn't it?

Melissa said...

I don't have a child, but I am deaf, and have always been treated as though I have special needs.

You are an incredible source of inspiration to me, and I love reading your blog, and seeing Alex grow.

Kasey said...

Hi from So. California. I stumbled upon your page one day. I love reading your blog. Alex is just so precious. I enjoy all the updates and the pictures. =D No kids here. But love to read about special needs kids especially.

Paula71 said...

I am Paula. Mom to Zachary. He was preemie had a feeding tube(NG) and has lasting effects of IUGR. He is delayed 2 years across the board and has been diagnosed ADHD. We have not been diagnosed anything else yet. The search is still on due to other "symptoms" he exhibits. He has an aversion to many items that you and I consider normal to touch and taste. We live in The colony, TX.

Myssie said...

Hi! I am Myssie, mother to William (2, RTS).

William's Future plans: Eat by mouth with no need of feeding tubes and to become President!!

Kelly said...

Great idea Jessica.

Mom: Kelly
Precious Angel: AnnaKate
Special needs: indeed..she is very special, RTS is just a side note.
Age: me (36), AnnaKate (2.5)
Location: South Carolina
Desire: To meet Alex and Jessica
Love ya
Kelly

Marissa said...

Hi, I am Alicia, mommy to Marissa who is 20 months old. We live in Colorado.

Marissa had issues even before she was born. When she was born at 37 weeks via c-section, she immediately went into respiratory failure and was intubated. She also had a PDA which was ligated when she was 3 weeks old. After 10 attempts to keep her off the vent, she had a tracheostomy placed when she was almost 2 months old. She had a g-tube placed at that time as well.

She came home to us after 2 1/2 months. She has swallowing issues, partially due to the trach. She has had two aspiration pneumonias and it has been determined it is not safe for her to eat orally. She has grade 4 reflux in both kidneys and will have surgery to correct this in Jan.

We are hoping to get her trach out in the Spring or Summer. She will have the g-tube a lot longer.

She is such a blessing in our lives. I have to remind myself daily of all she has come through now that she has entered the terrible twos! She is a handful but her dad and I would be lost without her.

Sorry I wrote a book. Just count yourself lucky that I didn't detail all of her congenital issues! Yes, there are more!

Thank you for this post. It is wonderful to know that we have a whole other "family" out there!

Alicia

Emily said...

Hi. I'm Emily, mom to a special 2.5yr old little girl named Dakota Rose. As for a diagnosis, it seems like we've still yet to hit the nail on the head. She was born almost 4mos premature has a genetic kidney disorder called Bartter's Syndrome, a deletion on her 18th chromosome, significant lung problems we're still investigating, HGH deficient, g-tube dependent and has developmental delays across the board. She's absolutely precious and we love her dearly. We come from Austin, Texas.

asplashofsunshine said...

It feels strange to comment for some reason. My children and my family are not struggling nearly as much as you or many many many others.

Juliana-age 6- Kawasaki Disease diagnosed at 13 months.
Kevin-age 3- diagnosis unknown- seemingly healthy at the moment.

Oh, from California.

connie said...

Hey, Jessicaaaaaa. It's me, mommy to Extra Special Mallorie Rose, in TX. Because I dug in my heels and refused the genetic testing nearly everyone medical was insisting on to confirm an "incompatible with life" diagnosis, Mal got labeled, instead, "baby with multiple congenital anomalies." You know. Because we can't understand someone or really know them, unless and until we label them. :)

And she is the icing on our family's cake. And the child God chose to show me just how very much He loved me, because I had always had a struggle comprehending that. Not any more!!!! :)

And you are my BFF, right? love you. connie

Shari said...

Hi my name is Shari from Oregon state. I, too, have a special needs child named Curtis, but haven't mentioned it here. He was born at 34 weeks seemingly healthy. He got very ill with spinal meningitis and a very severe stomach illness when he was six weeks old leaving him brain damaged. The limbic system in his brain is 'disconnected' and doesn't work properly. In short, the right side of his brain and the left side do not 'speak' to one another causing severe confusion and learning disabilities. He stopped using a g-tube at 3 years old. We currently just got him out of a neuro rehab center here in Oregon and he is doing much better. Our situation is so small compared to yours that I didn't want to say anything.

Anonymous said...

Hello from NC. I'm a mother of a 27 wk preemie(no delays); he is 3-1/2 yrs old -- 37 lbs. I've had feeding issues w/ him ever since he was born. He does not have swallowing/chewing problems, but prefer to drink vs eatting. My father has had several strokes & had a feeding for over 11 months. Though I feel he should be eating like all other toddlers, a snippy cup in the morning & evening does make it easy.

My heart goes out to all parents of special-needs children. I enjoy reading your story.. thank you for sharing.

Dawn said...

Hi-I'm Dawn from South Carolina. I teach students with special needs and I am love checking on Isaac and seeing how you and he are doing!

Nancy said...

Hi, Jessica! I am the proud mommy of 4 boys, no extraordinary diagnoses compared to what you and many others go through!(#3 was preemie; #2 and #3 are both labeled failure to thrive because of their small size; and #4 has a dairy protein allergy)

We live in South Carolina, and I enjoy reading your blog and following Alex's progress. I have a Master's Degree in Special Ed., and have worked with special needs kids for a long time. Your site is linked on my blog. :)

Nancy

Sharon Harrison said...

Hi...we corresponded before but I am mom to a 22 year old daughter that works with special needs kids. Not sure how I found your blog but I love reading about and praying for you guys. I also have a 20 year old son.

Finding Normal said...

Hi Jessica. I'm Debbie, mom to Addison (and Noah LOL). She was born with partial trisomy 9, a bit of extra chromosome 9. She has had 9 surgeries so far, and is healthy despite being g-tube dependent and labeled failure to thrive. She just turned 2 and is now sitting for brief bits unassisted and figured out how to get into sitting all by herself, the "wrong" way.
We're all about taking one day at a time, and not worrying too far into the future. I hope that someday she will have tantrums and drive me crazy like her brother does, and run from me when I try to nab her for a time-out. And then maybe even yell at me from her time-out about how she's all done being naughty. She'll learn from the master. :)
She has been my life's greatest blessing. Who could ask for more?

Marissa said...

Jessica,

I definitely would not mind you putting Marissa's blog in your blog links. It would be an honor.

Where in Colorado were you born and how long did you live here before you moved? Do you have family that is still in the state and do you ever come here for visits?

I was born in Denver and have lived all over the state, but mainly grew up in a tiny town called Pagosa Springs. We now live in Colorado Springs and have been here for 10 years.

If you want to e-mail me, I am at anjcortez@hotmail.com

Alicia

angie said...

Hi...I'm Angie, mom to 2 very special kiddos. I have Emma who is 5 and was born with RTS AND Biliary Atresia (the liver and bile ducts were formed incorrectly). She had a liver transplant (her 7th surgery) when she was 7 months old. I feel like I am new to this whole RTS world...even though she is 5. We've been trying to hide in the closet in hopes that it would go away, but it is here to stay, and we thank God everyday that our Em has been given a second chance in this life because she has and will continue to change the world! She has overcome more in her short life than most people experience in their entire lives. Her future aspirations (at the moment) include taking over the role of Hannah Montana and being the next star in High School Musical 4??? She is so sassy, and I wouldn't want her any other way. I would love to hear from some people that have older kiddos with RTS.

I also have Owen who is 6 months old. He was my challenging pregnancy, but has been my easy baby. He's beefing up every day so that he can wrestle his sister very soon.

I, of course, LOVE to read your blog and I feel so connected to you and Alex. So much of what you write about has been (and continues to be) my life. I hope that I can help you through hard times by looking at how far Miss Emma has come. You just wait....Alex's sassyness is waiting right around the corner:).

Tena said...

I am the momma to my WONDERFUL RTSweetheart Caden, just turned 6! All my love to you, we are going to go placed girl!!!!

Anonymous said...

hi i am a mommy to Sarah, she was born 13 weeks to early, she weighed 2 1/2 pounds. She is doing great no health problems and she is catching up fast. i love reading your blog, i usually read my favorite ones before turning in for the night.

Kerri H said...

Hi Jessica and Alex!
You know me...Kerri and Logan from Omaha,NE. He is now 3..born with RTS/diagnosed at birth. He is also our one and only!! He has given us many gifts already more than I can count and has changed our lives! They are very special angels! Keep up the great work with your blog..take care! Hugs!

Amy T. said...

I'm from St. Louis, MO. Mom to two boys, ages 11 & 13. I'm not sure what blog I read linked to you around the time Alex was born, but I've been reading ever since. What a precious little guy you have been blessed with!

Betsy McK said...

Betsy from Peoria, Arizona.
I have 3 boys 6, 4, and Baylor 14 months. He and Alex have the same Birthday 9/7/07. I love reading your blog and seeing your precious son.

ANewKindOfPerfect said...

I'm Peanut's momma! She has cerebral palsy and a metabolic disorder. She has a g-tube, and walks in a gait trainer when she's not in her wheelchair. She's the light of my life!

Cindy said...

Wait, is there still space? I was busy today and am just now reading your blog.

Cindy, mom to Natalie (2.95, RTS), in Orange County, CA.

karen said...

hi My name is Karen i have a speical needs girl Lucy she was born with her left vocal cord paralized she has a gtube since one month old, she can eat and drink only puree food, but she only eats when she wants to which is not very often. Lucy was full term so it was a surpise, she is now 3 and only 23 lbs.
I love your blog!
Karen
NJ

Anonymous said...

Leigh here. Found you by way of Susie(second comment). I'm a mom to 2 girls in East Tennessee. One is 12 and the other is 7. I don't have a blog but read plenty. I just love seeing pics of Alex. I know when I have a bad day to click on over and find a pic. He always brings a smile to my face. Thanks for letting us in on your life.

Holly said...

Hi, I'm Kelly's friend Holly. I'm the mama to a 2 year old and a 3 month old. I'm just attached to Alex after reading his birth story.

Kim said...

Hi!

I'm Kim, I live in Canada and I have a 2 year old with multiple food allergies. She's very special to me!

The Dales said...

Hi, I am a mommy to a 16 month old little boy. He was diagnosed with heartblock at 5 months gestation. He was told he would not over come it and live with a pacemaker, if he even made it. He was born last July with not a complication to be seen! He is my miracle! We are in good ol' SC!

Chris and Emily said...

great idea!

Mommy from SC to 8 month old little boy with a very rare form of dwarfism - odontochondrodysplasia - we were told he would never live at birth at our 20 week ultrasound due to a small chest that would never allow for lung development. He came out screaming and has been using those lungs ever since!!!

Love me some Alex!!

Jessica said...

Hello from Italy! My name is Jessica, mother to 4 kids with no health issues. I check on your blog regularly because to me (on the OUTSIDE of it all) it seems that little Alex is really growing up and making amazing progress... He seems to have come such a long way, with all your loving care and attention... I just like to check up on how he is doing : ) and how is mama is faring : )

Alicia Hart said...

Hi! My name is Alicia and I have 3 children one of whom is on the autism spectrum and has an eosinophilic disorder. I live in Central Illinois. I know some adults with RTS and love reading about Alex!

Alicia

Long's Joyful Journey said...

I love your blog! I have linked it in my blog, in a transcript of a day in our life. Your blog title, New Kind of Normal, has meant so much to me! That is exactly what it is! Perfect words!
I have 4 kids, Marley 8, Carpenter 4(Down Syndrome or T-21, which ever you prefer), Sadie 2, Rowan 1!

My life is never dull! Wonderful and encouraging blog!

Fellow sleep deprived mom,
Stacey O. Long

Marcie said...

My name is Marcie and I live in Santa Monica, CA. I have a 28 month old daughter, GG, who has no health issues.

Anonymous said...

hi - this is your cousin Julie from scenic Urbana, IL. I am the mother of Asher who is 7 (and just one day either younger than Noah)

Jacqui said...

Jessica your blog has also meant so much to me on my journey as a mom to precious Matthew 2 years old who has RTS. Even though I am on the other side of the world here in Cape Town, South Africa my heart feels so connected to you - keep sharing :)

tomandcheryl said...

Hi, my name is Cheryl. I do not have a special needs child but we did fear my son was going to be. My placenta was not functioning correctly and I had him 5 weeks too soon. He had lung issues when he was born and was in the NICU for 1.5 weeks. Nothing compared to what you are going through.
However, my sister gave birth to a baby boy in 1998 with Trisomy 13. They did not the diagnosis before his arrival and were unprepared for his impending death. He lived for 6 days. It was the most difficult time in my family's lives. I have a little girl also who is 3 years old (my boy is 9 months).
I think I found your blog through "bring the rain." I feel connected to you and Alex b/c of my nephew.
I pray for him every day and enjoy reading about him.
You can link to my blog through my google user name if you are interested.
~Cheryl

Michelle said...

Hi Jessica! Mommy to Austin (6 yrs RTS) in Watertown, NY!

Beck said...

I am just a blog lurker that came here from who knows where! :) I love reading about your boys and seeing the pictures. So precious! I am pregnant for the first time and love reading about all types of special needs children and how you give such hope and love. Your courage is amazing and I know if God blessed me with a special needs child I could do it just like you do :) God Bless!
Becky
sbsessions.blogspot.com/

Life with the Crowls said...

Hi I am from Ohio and have been flowing Alex's story for a while now while i do not have a special needs child my daughter was faliure the thrive for the 1st year she is now a healthy 2 year old. She had a feeding tube for a year and had to have bolus feeds every night. I love reading your blog. God Bless you and your family you are a real blessing.

LuAnn Chapa - Keller TX said...

Hi Jessica.....I am Grandma to Frankie (Our Journey....What's next?) I catch up on your blog every couple days as well as several other of the RTS kiddos. The entry regarding anonymous really touched me. You put into words what so many people feel. You made an awesome statement and I for one thank you as I am sure many others have also done. Frankie is my 6th grandchild and I must say he has taught myself and my family so much. I am so proud of all the Moms and Dads of these special needs childrens and I truly believe you were all hand picked! May God bless you and your family as you are truly a blessing to so many. All three of your sons are beautiful children!

Amy B said...

I wanted you to know how much I enjoy your blog. I am also a mom to a special child. It is so nice to know I am not alone. Philip has had over 20 brain operations, shunts,strokes, and orthopedic operations..
www.caringbridge.org/visit/philipbriggs
http://ourdailyblessinglife-amyb.blogspot.com/hey

Michelle said...

I check in on Alex because he is ADORABLE and I love to see something new he has accomplished. I also love praying for you when I read updates because my hat is off to you! I love how real you are. Your boys are so blessed to have you as their mom!
Michelle
Texas

Oh my kiddos are Colby (4y) and Melissa (1yr)!

Bobbie said...

I just seen this. I have been taking a break. I read about Alex everytime you update. He gives me hope.

My special little man JT was born 13 plus weeks early weighing in at 1lb 15 1/2 oz. He was healthy as a 1 almost 2 pounder could be then contracted NEC. He had several surgeries for this and in his whole life of 8 1/2 months. He also had two surgeries on his heart. one a failed PDA one a successful one. He had ASD/VSD and also, a horseshoe liver, his brain was a little smaller than it was supposed to be. He got ROP and had 3 surgeries for this. He was in liver failure and needed a liver/small bowel transplant that he never did get because they couldn't fix his heart. But, that was just his dianosis.

JT was the best he taught me so much. He was spunky and silly and had a wonderful personality, was always smiling and never had a down day no matter how much they poked and prodded him. He taught me perserverance and that the Love of God doesn't leave you in the troubled times. He is there to hold you up and carry you. That is my special little man who will always hold a place in my broken heart.

We had 8 1/2 wonderfully blessed months with him. And I believe the NICU we were in made it the most specialest time ever. Without them I couldn't have done this.

Thanks for Sharing Alex and yourself with us. He has come so far and I know that is because of what a special mommy you are!

Jodes said...

Hello from Canberra, Australia! I don't have kids myself, but I found your blog a few weeks ago and am already in love with Alex. Your faith is a wonderful thing, and I thank you for sharing your beautiful family with the world!

Kelly said...

Kelly mom to Max (almost 2!) with RTS and mom to Ava (5) in WI. Future plans: I hope Max will be able to eat his birthday cake this weekend!!

Jolly Johnstons said...

I'm Katie, mom to Eliana. She had IUGR, but is showing now ill effects of it now at 21 months. I found you through baby Jacob's blog and love checking in on your precious family every day!

Gibson Twins said...

I'm Brianne, mom to 2 year old twins Ryan and Allison (neither have "special needs" but I still love to read your blog for the general message that is underneath the posts). I love checking in on your blog because it is so upbeat and positive (plus who can resist the pictures!!)

Rebecca said...

i am not married or have kids yet, but i have a sister who is 13 and has CHARGE syndrome. my parents were told that when she was born she would be blind, deaf, and mentally retarded. none of which she is! she does wear a hearing aid, but never stops talking! she didn't start walking till she was 4, and now she wont stop dancing to hannah montana! she doesn't eat by mouth and has had a G-tube since she was a couple months old, my mom has been through all those feeding issues as well.

i have been following your blog for a while, but have yet to comment. keep on blogging, it's a refreshing break from college work!

judit said...

Hi, My name is Judit, and I have a son (Sámuel), who is almost 2 years old, and diagnosed with RTS when he was 6 weeks old. We are from Budapest, Hungary, and I'm a frequent reader of all of the RTS mom's blog. Our future plan with Samu: walking, eating and talking all by himself :)

Becca said...

Hi, I'm Rebecca. I don't have any kids myself, but my beautiful niece is special needs. Lilly was born full term, with no indications of any problems. A little over a month later, she was diagnosed with microcephaly. We were told that she would never develop, and wouldn't even be able to recognize voices.

She is almost two and a half now, 3 ft tall and 16 lbs (So tiny!). She recognizes people (voice and face, sits on her own, and is starting to crawl!

I found your site a few months ago through Waiting for Happy, and love to read about your sweet Alex.

hennhouse said...

Karin. Mom to three with special needs. Isaiah with RAD, ADHD, ODD, and CD. Isaac with RAD, hearing loss, and ADHD. Esther-Faith with Spina Bifida, hydrocephalus, Chiari II malformation, strong gag reflex, and significant gross motor disabilities.

Anonymous said...

Hi. I have been following your blog for quite awhile now and when I took my daughter to the pediatrician a couple of month's ago, I saw Alex's picture up! Small world, huh. Not to mention I found you months ago through Susie's blog in Australia. I also live in Jacksonville.

I am in awe over the amazing strength you have when taking care of your sweet boys. Alex is just too cute! Praying for you...

The Slocum Family

Cathy said...

Hi Jessica, It is Cathy, Annabel's mom, she has full Trisomy 18 and she is 3 1/2. She is really a special little girl and we thank God everyday for her. We are from Texas near the coast! Thank you for your post on our special angels.

Rebekah said...

Hi there, I think you have been to my blog already but I'll go ahead and do a proper introduction... I'm Becky and my son Ricky will be 13 in two weeks. Ricky was born at 33 weeks with a ruptured bowel (repaired at birth and reattached at a few weeks old) and subsequently diagnosed with cystic fibrosis. He is in the hospital 1-2 times a year. Earlier this year he got a medi-port which makes the IV antibiotics easier. He has also been speech delayed and had numerous developmental/educational issues, possibly related to his prematurity, but who knows? He is also bipolar and probably somewhere on the autism spectrum. So his official diagnoses are CF, bipolar-NOS, PDD-NOS, sensory processing disorder (mainly auditory). He is my special guy and I love him so much. I would do anything for him. He is on 20 medications at this point, all for CF except for the four psych meds he takes.

My other kids are Andrew (10), who is neuro and physically typical and in fact, gifted, and Misty (2), by my second marriage, who is looking to be pretty amazing. The three of them put together make up an incredible set of kids.

I'm unfortunately in the middle of my second divorce. I have done the single mom thing before, and while I'm not looking forward to it, I know that it is sometimes very rewarding to depend on one's self for what you need!

Incidentally, I stay at home (selling on eBay and Amazon whenever I get the chance) and work part time as a library clerk.

I love reading your blog entries. Alex is so cute and I love your optimism. People often ask me, "How do you do it? It seems so hard." Well, how can I NOT do it? What choice do I have? I have this incredible child (well, children!) and I have to make sure he gets what he needs! It's not like I can just give up...

Oh, and we are in San Jose, California, USA! Capital of Silicon Valley! I can't remember where I found you, but if you look at the many blogs I read you'll see that we have many common favorites, I think. :)

Sawyer James Peacock said...

Whoops, little behind-I am not sure if you are going to check this since it's pretty far out. But hey why not!

My name is Tarah Peacock I am a young mother (just turned 22 in October) to Sawyer is is almost 4 months old. Diagnosed with RTS. We live in Utah.

Future plans: Eating thanksgiving turkey (well that's me) and avoid ear infections (that's Sawyer)