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Forum: Children with Special Needs

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  #1  
May 30th, 2009, 08:58 AM
Platinum Supermommy
Join Date: Apr 2006
Location: Maine
Posts: 5,882
Hi everyone..I am not sure if this is a right place for me or not, but I thought I would join in! I am all for talking to other mom's who might understand how I am feeling.

I am Lauren, Mommy to 3 great kids..ethan is 6, Lucas is 3 and our baby girl Maggie is 9 months.

Maggie has a rare, life treatening blood disorder called Diamond Blackfan Anemia (DBA) and is dependent on blood transfusion to stay alive. Basically, DBA is a bone marrow disorder and means her marrow makes NO red cells at all. We found out when she was 4 weeks old..brought her to the dr. for a cold and a few hours later found ourselves in an ambulance being rushed to the hospital.

We actually started with problems during the pregnancy..she had a VERY large cystic hygroma..they told me she probably had turners syndrome or trisomy 18. We had the CVS test done and all was normal. Then towards the end of the pregnancy her spleen, liver and heart were all enlarged..but she came out perfectly healthy. We never knew anything was wrong until 4 weeks later when we found out her Hemoglobin was VERY critically low and she was in congestive heart failure.

She tested postive for a specific gene mutation (RPS 19 mutation) that about 25% of kids with DBA have. DBA is extremely rare..she is one of about 750 in the world.

So, right now we are treating her with transfusions, in the fall we will try high doses of steroids, and more than likely she will have a bone marrow transplant at some point before the age of 10. Luckily for us, our 3 year old son is a perfect match for her marrow.

Other than the anemia she is pretty healthy..she was diagnosed with Failure to thrive..but lately has been gaining/eating a little better and so far we have held off a feeding tube (hooray!). She has a central line in her chest that is our god send (no pokes anymore) but sends us to the hospital a lot as any fever is a big deal. And we deal with nose bleeds and lately, ear infections. Going to see an ENT soon..thank goodness.

That's our story in a nut shell. I have a caring bridge page for her, the link is in my siggy if you want to learn more.

Thanks for reading about her and I look forward to talking with all of you!!
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Lauren
Mommy to- Ethan, Lucas and Maggie
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  #2  
May 30th, 2009, 10:08 AM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Hello & welcome! You will find the ladies here are wonderful! Please jump right in so we can get to know you better.

I'm Stacy, Mommy to Andrew & Luke. Luke is my SN child. He was born with Trisomy 21.
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Thanks Yvonne (Jaidynsmum) for my beautiful siggy!














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  #3  
May 30th, 2009, 11:02 AM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
Posts: 9,023
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Hi and Welcome to the Special Needs Board! My name is Hope, Mommy to Dakota (9), Christian (4), and Ava (13 mths). Ava is my SN child. To summarize, she has multiple defects to her airway and skeletal system, along with cerebral palsy. We see a genetics doc later this summer, as they believe she may have a syndrome of some sort.

I'm glad you joined us. The ladies here are wonderful. We have a very diverse board with many different types of needs, including another member whose son has a very rare disorder. Please, jump right in.
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Thank you, tasha_mae, for my siggy!
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  #4  
May 30th, 2009, 06:38 PM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
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Welcome hon; I'm sorry you're joining us - I hate to see anyone need this forum! - but am glad at the same time that you've found us. She is totally gorgeous!

I'm Kel, mom to two boys. Eric is almost 3, and Danny is 14 months. Danny was born with a rare and severe illness called CMV, which attacked him full force. His platelet and white blood cell count were extremely low when he was born, and he relied on transfusions for his first 2 weeks to survive. Today, he is deaf with cochlear implants and a few months globally delayed. He receives PT and OT, as well as therapy relating to his cochlear implants, and has ... something we haven't narrowed down yet that is causing him to completely refuse table foods; he still eats exclusively baby food. We aren't sure if it's sensory or low tone or what related yet.
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Thank you Jaidynsmum for the siggy!
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  #5  
May 30th, 2009, 10:52 PM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
Posts: 8,137
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Welcome!!! I haven't been on this board for too long, but I already feel very much at home-the ladies here are amazing!!! Maggie is adorable-your siggy pic is SO cute! Like Kel said, I'm so sorry that you need this board, but so happy that you found us!

I'm Jessica, mom to Kannon (2.5), and Milo (1). Milo has Russell-Silver Syndrome, another extremely rare condition, a form of primordial dwarfism. Numbers online are misleading-one misprint leads to pages and pages of making it sound like 1 in 3000 have it...there are about 400 cases of RSS right now. Many kids are diagnosed with it who don't have it...there are similar conditions, but everyone here understands how each condition has its anomalies, and how every kid within that condition has something different! ANYWAY, the point is, I've had to become the expert, as I'm sure that you've had to with Maggie!!! Milo has global problems, some related to RSS, some possibly to his birth circumstances, and others related to possible craniosynostosis. (We have an MRI on Tuesday.)

Again, welcome, and jump right in! The moms here are helpful, so supportive, and fun!
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  #6  
May 31st, 2009, 04:57 AM
Ma-2-Thing 1-2-n-3's Avatar Leslie ~ 2 boys ~ 1 girl
Join Date: Dec 2007
Location: Virginia
Posts: 18,885
Maggie is so beautiful! I am glad her brother is a match! I have 2 kids - Austin 6yo and Kyndal 10 mths. Austin has Sensory issues.
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  #7  
May 31st, 2009, 10:18 AM
docsmomma's Avatar Platinum Supermommy
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I know you!

Glad you found us here. Like you, I wasn't sure WHERE I belonged, but started posting here and have found alot of comfort in not feeling alone with all the appointments and lab work and stuff. This is a great group of ladies! Welcome.

How has Miss Maggie been lately?
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  #8  
May 31st, 2009, 02:15 PM
Platinum Supermommy
Join Date: Apr 2006
Location: Maine
Posts: 5,882
Thank you all for the warm welcomes!! I look forward to talking to all of you..like you guys said to me, I too wish none of us had to be here, but thankfully we have eachother to lean on!

Traci- I think I might know you too!

Maggie is doing okay..she has a transfusion this week (which is a week early, unfortunately) and she is MISERABLE right now. It seems like as she gets bigger and more active she can't handle the lower counts as well. I know I can't wait for Thursday and I am sure she can't either!!

What about little Mr. Joey? It's almost his birthday, right??
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Lauren
Mommy to- Ethan, Lucas and Maggie
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  #9  
May 31st, 2009, 03:48 PM
Platinum Supermommy
Join Date: Mar 2005
Posts: 8,671
I'm late but welcome anyway

I'm Liz, mama to Tyler(7) and Layne(3) both my boys are special needs but Layne more so than Ty.
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My Blog
http://howdyinc.com/mrshowdy/
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  #10  
June 1st, 2009, 05:30 AM
*lynea*'s Avatar Super Mommy
Join Date: May 2009
Location: Kansas
Posts: 593
Welcome! I just joined the board also, I have 2 children, Jay who is 7 and has Prader-Willi Syndrome and a son Jordan who just turned 2. Your daughter is very cute, love the shades!
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  #11  
June 1st, 2009, 11:15 AM
docsmomma's Avatar Platinum Supermommy
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Quote:
Originally Posted by EthanLucasMaggie View Post
Thank you all for the warm welcomes!! I look forward to talking to all of you..like you guys said to me, I too wish none of us had to be here, but thankfully we have eachother to lean on!

Traci- I think I might know you too!

Maggie is doing okay..she has a transfusion this week (which is a week early, unfortunately) and she is MISERABLE right now. It seems like as she gets bigger and more active she can't handle the lower counts as well. I know I can't wait for Thursday and I am sure she can't either!!

What about little Mr. Joey? It's almost his birthday, right??
Sorry that she needed a transfusion earlier. It is so frustrating when things change from the "plan". I am glad your going to see the docs in NY. We're hoping to go see Dr. McClain in TX (he's the BEST I hear) once we figure out finances. Now that Joey's SSI has been approved, it should be easier...

Joey is doing great! We leave on Friday to go to the histio conference in Northern Cali. I'm nervous and excited. I will get to hear from the worlds best histio docs, and meet other histio families.

He will be 1 on the 19th! With the other kids their first birthday made me sad because they weren't my "little babies" anymore. But with him, well, at one point we didn't think we'd see his first birthday so we plan to celebrate.
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