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I'm back (I've been gone a while!)

lemen99lemen99 member
in Special Needs
I'm just popping in to say hi, I don't have a lot of time online anymore. :( My kiddos don't nap and I have my hands.ful! :) 

My little 26 week preemie is 5 now.  Here is an updated picture.  He is really catching up in a lot of ways - in PT, ST (still way behind in social skills), OT, and is doing hippotherapy for OT/sensory issues.  He LOVES hippotherapy.  My son was diagnosed with anxiety since I've been here.  it got really really really really bad this past May and he started medicine.  I was nervous but it was necessary.  The combination of anxiety meds & hippotherapy is the best thing we have ever done.  I mean hands down. He has just BLOSSOMed since then.  He does so so so many things now (like at least 50 haha) that he couldn't even try before because he was so anxious.  I'm not sure if anyone's kiddos here take meds for anxiety so I'm happy to talk about that if anyone wants to.  

Andrew never used to even look at my youngest, he could have cared less about him but now they are BFFS. It used to make me so sad and it makes me so happy they are pals.  

We are starting kindy meetings so that makes me nervous. It makes me relive his NICU experience and it's all kind of just surreal.  I honestly never thought I'd be a special needs mom.  He's such a sweetheart though.  He is SO excited for kindergarten and asks every day to go.  Oh and suddenly he just knew how to read, like chapter books, it's kind of amazing. 

medically he's doing ok.  Back on reflux meds after 3 months of coughing and realizing that was why.  Kidney stones are a constant battle but currently controlled after realizing he'd outgrown his medication dosage.  I was hoping to be discharged from ENT to learn he has some high frequently hearing loss & middle ear fluid, but we go back in a couple months so I'll know more then. 

I'm trying to spend more time offline and more time doing things that "fill me up" as my husband says.  Like sewing.  I started running this summer, but we've had a ridiculous winter in indiana so that's on hold temporarily!  :) 

My son Elliott is now 2 yr 9 months.  He was a 35-week preemie.  He has had ST OT PT all at some point but recently graduated from ST and his language is outstanding.  He is LOVING school.  He also recently broke his foot in 3 places, transitioned to a big bed, and started potty training last week! ahhh!!!!

Part of me has major baby fever (our kids are so cute, haha, I'm not biased!) but some days I don't think I'll make it through as it is.  We are terrified of having another micropreemie and have 2 perfect little boys, so we're done. :) 

Anyways, that's all! :)

Here are my buddies!
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Re: I'm back (I've been gone a while!)

  • Assembly_ReqdAssembly_Reqd member
    Welcome! Your boys are Supercuties!
    WAY 2 Cool 4 School


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  • realisticdreamsrealisticdreams member
    Hi!  Welcome back =) You have been gone a while! But, I follow your blog lol.

    DD1 is scared to try alot of new things..(like play ground equipment, play places, etc) I never really thought about it being solely anxiety related.  I did think it was weird she can go through major medical procedures but is afraid to play in McDonald's (And not because of the germ level!)  Her little sister who is half her size is far more outgoing than she is.  Something to think about I guess! What meds did you put him on with good results?

    Glad both boys are doing well, with the exception of the break!  

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • bumpuser511563bumpuser511563 member
    Welcome back! Your boys are cute!
    Baby Birthday Ticker Ticker
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  • lemen99lemen99 member
    I didn't realize that the reason andrew wouldn't/couldn't do anything was anxiety either.  I knew he had sensory concerns but didn't realize how bad they were and they got worse. He scored the max possible in 4 areas and several other concerning areas!  his doctor is the one that said he needed anxiety meds and then it all made sense.  he wasn't functioning day to day and it got to the point where I was spending my day calming him down doing normal things like riding in a stroller.  

    He's on Setraline (spelling?) - generic Zoloft. 
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  • lemen99lemen99 member
    (I just thought andrew was cautious but he's really not now - he's still very calculated but he's not terrified all the time.)
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  • HopeAlive3HopeAlive3 member
    They are SO precious!! Absolutely adorable. Thanks for sharing. :) 

    I love to run too, but like your situation, the weather here has been crazy! Do you miss being able to just get out and run for a while??
    Love my Airman
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  • lemen99lemen99 member
    I totally miss being able to get out and run.  I used to not be able to do it, I was too bored, but now I relish in that time to get fresh air and just go and listen to music. I also started cutting the grass and let my husband hang with the kiddos!!
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  • kcisthebombdotcomkcisthebombdotcom member
    edited February 2014
    Welcome! I have a little girl with autism and were going to be starting hippo therapy soon. I'm glad to hear it has helped a lot. Your boys are too cute!
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  • Zeidy01Zeidy01 member
    Your boys are adorable! So glad to hear premies doing well, I had two :)

    I have twin boys with ASD, but one suffers from major anxiety and OCD. His devep pediatrician suggested Zoloft. We are hesitant, not sure why because I myself take meds for anxiety. I know this is really holding him back. I would love to hear more about it if you don't mind elaborating.
    Thanks!
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  • lemen99lemen99 member
    I was so not expecting our pedi to suggest zoloft. It really threw me and all I could say is "okay, let me think about it."  He is *really* hands off though, so I knew if he suggested it and said we needed to try it we probably did.  I sat down and thought and realized his anxiety was controlling our lives.  It must be even harder for him.  He also mentioned possibly it is holding him back from learning social skills.  I have to say socially, he has also really taken off.  :) He was at 0% interactions with kids at the start of the year and now the ST told me today he is having conversations with some kids.  (!)  I'm not one to love medicine, but I'm so happy we did it.  I really am.  I was so scared to try it I wanted to puke, I haven't taken it myself and was afraid of the side effects.  

    Our doctor put him on meds when he saw him in June, just after school let out. Apparently he had me schedule that appt in June b/c he knew his anxiety would be worse then (out of his routine he depended on) and he was right.  He was a disaster. Something to watch for and be ready for.

    Please ask any questions you're wondering. 

    One comment I'll make is there was an adjustment period.  He started on the min dose 25 mg per day for a few weeks.  He was not sleeping well but very tired, he had diarrhea and stomach aches.  he was crazy.  I called and they told me to try half of the minimum dose.  We did and all of that went away and he adjusted well.  He is still on a half dose and it's enough to help him. 

    An example of the stark difference is literally a week after starting meds he started to talk about learning to ride his bike. Still wouldn't try it.  I'd say by 3 weeks after his meds he got up the courage to try it.  I think at a month, he could pedal and ride his bike himself.  Previously, he would have a panic attack sitting on a bike, even if I held him with 2 hands, due to vestibular sensory issues.  I could go on and on and on.  and I think that and hippotherapy together are an amazing combo!!!!!!!!!!!



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  • st.augbridest.augbride member
    Welcome! How did you determine that you needed to start reflux meds again? My son (35 weeker, IUGR) had wicked reflux for years. We again tried stopping it a few months ago and he hasn't complained but he has had a cough that won't go away. Now, there have been tons of colds too, but still the cough won't go away, so I've been wondering. But he communicates well and hasn't acted like he's in pain...
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  • lemen99lemen99 member
    I took Andrew off reflux meds 2 summers ago when he was 3.5.  he seemed okay.  I didn't notice anything.  I did notice he had a little trouble chewing difficult textures, but that would be like dry clementines or tougher meat so I wrote those off...

    Winter came around and he coughed from Jan through March (last year) for 3 months.  I know that winter illness is common, but I realize he's never been a cougher.  At first I thought asthma, but came to realize, maybe it was reflux.  We put him on meds, the cough went away, and he hasn't coughed since (so through this entire winter) more than just minimally at the peak of a cold. 

    I was surprised I couldn't see any other symptoms. I don't like meds and I don't want them on them and I felt like we were guessing. Our GI said most kids can't describe reflux until at least age 5.  They said that not only is it a difficult sensation, but that these kids have lived with that reflux feeling forever so to them it is normal.  That made me feel bad for him so we tried them back again. 

    He's been quite healthy.  I would go back on them.  Your story sounds so very similar. 

    My youngest son (2.5) also just went back on, and then back to a very high dose.  He was having infection issues much worse than he ever had and we were looking at adenoid + tube surgery, whereas they think he may not need any surgery with the meds. 




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  • lemen99lemen99 member
    (oh, and my also son also communicates very well now, his speech is now above his age because he has been in ST is whole life - - but he keeps getting ST at school. Anyways, he still can't tell me.  He says he has reflux b/c he hears me say it, but that's all.  One day recently, for the first time, he's over 5 now, he told me that his dairy queen and snack after that (clementines) made him feel like he had to puke.  Those are both reflux aggravents so I'm assuming that was it b/c he had no GI bug symptoms.
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  • Zeidy01Zeidy01 member
    Thank you so much for sharing. I will show this to DH and have a discussion about it. This definitely will help with our decision.
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  • lemen99lemen99 member
    Np! Let me know if you have any questions :)
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