what's up with you?

[Anonymous]

Hey all! Not sure if my sig is accurate, no idea what’s on there! Anyway, I came here to get the URL correct, for a new Neocate mom who contacted me for info. I gave her this addy, as y’all helped me TONS early on with all the GI issues.

Let’s see…Emma is now 3 1/2, WOW! She is in PPCD (preschool for children w/ disabilities) & doing really well there. She loves it, she goes 5 days a week. She was officially diagnosed with autism over the summer. She keeps us busy, to say the least! She is so wonderful & amazing, I learn from her everyday! She still struggles with communication, behavioral issues, etc. Not a huge surprise w/ an autism dx! She still requires daily tube-feeds. We recently began a group feeding therapy, & she actually put hamburger in her mouth (& spit it out, but wow, I was blown away by that!). I’m hopeful we can get her to eat/drink more.

Her big sister is doing great, in 1st grade & so smart & incredible. She is still having a lot of GI issues–her reflux is actually getting worse, constipation continues, some new respiratory issues too. Not sure what’s up with that…but hoping things get better for her SOON.

Both girls were dx’d with Ehlers-Danlos Syndrome (which I was dx’d with as a teen), no big surprise. It helped connect some dots, especially with Emma’s birth defects & hypotonia.

Great to see some old names on her! I’ve thought about y’all & wondered how your beautiful children were doing. We’ve all come so far! Take care.

Happy Holidays!
(((HUGS)))

[Anonymous]

Lauren,

So good to hear from you! Glad to hear that Emma is doing well in her new class. I’m sorry to hear about the autism diagnosis, but hope that this label helps her to get the right services. It sounds like she is a strong amazing little girl, and that the same can be said for her mom.

I’ve never heard of the syndrome you mentioned, but hope that it’s not severe. Happy holidays! Thanks for the update!

[Anonymous]

Hi Lauren,

Owe you an e-mail! I am so happy for you and Emma and Madi sound like they are just precious!

As always, you are such a great Mommy!!!

Ann Marie

[Anonymous]

Oh my gosh!!! I can not believe that it has been so long since I have been here. I needed information for one of my patients and then I got all involved reading everyone’s posts. It really is amazing what this site can do.

Our house, lets see… Things with Sammie continue to get better every day. We now only use the feeding tube if she gets sick (she still gets a strong aversion to food when she is sick) She is growing well and looks like a petite little 3 year old. That is nice to see. She continues to be cancer free (THANK YOU GOD) and her immune system disorder seems to be well controlled with her M-W-F shots of G-CSF. She has not been hospitalized in more than a year now, that is wonderful!!! She is quite funny and talks all the time. She still has some quirky sensory issues but they are very mild.

Lance is doing well, he is 9 and in 4th grade. He is so energetic and vibrant, I love it but it wears me out. He was hospitalized last month for very severe pneumonia and had to get IV antibiotics. That was no fun. He seems to have bounced back well. Other than that he is just your typical 4th grader. He is really too smart for his own good, he asks things that I do not know the answer to. His teacher says the same thing, it is too funny.

I have been doing well. I started working full time for a different pediatrician in May and I really like it. I had to have my Gallbladder out in september this year. It made a big difference in how I feel. I take Zegerid every day and that seems to be helping with the rest of my stomach issues.

I enjoyed “catching up” with all of you.

[Anonymous]

Wow, Janice! Sounds like things have been crazy, but going so fantastic for you guys! I remember some of your posts when things were not so great, so enjoy all of this! You deserve it.

So great to hear from you!!! Are you still making the weighted blankets? Dylan has one on his bed (helps him feel grounded to sleep) and he asked me for another one for his birthday. I know, quite a request for someone who is going to be 5, but if he wants it, I would love to get it for him.

Keep in touch!!

Ann Marie

[Anonymous]

Janice, it’s so good to hear from you! Thanks for the update- great news with Samantha!! and the rest of the family too. Glad you are doing well post sx. Keep in touch.

[Author]

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