Indiana Babies

I've not been around much....

Please don't share any of this on FB...we are trying to not let the whole world in on it until we get some more answers and have an idea of where we go from here.

Good news first -- I posted earlier about my job interview Wednesday.  I'm super nervous as it's been awhile since I've had one!!

We did find out that Ry is immuno-compromised, although nobody seems to have answers why.  He did have mono for 3-5 months so that definitely didn't help.

 Just as we have gotten through the immune system issues, we have been slammed with something new.

The ed team and our PT (both through first steps), along with our orthopedic surgeon have been "digging" into why he is so extremely muscle-toned, both physically and orally. He still gags on a regular basis, often to the point of choking (but not bad enough he can't clear it on his own). He's not walking, and he won't stand unless he's holding onto something in front of him. To stand with us holding his hands, his little legs just crumble and he goes down. He has no lateral balance, tends to roll his ankles outward.

Our first PT walked in and immediately said he needed to wear SMO ankle braces for AT LEAST a year, along with wearing his tennis shoes every minute he's awake. We ended up requesting a new therapist because Ry did nothing but scream while she was here, she was very abrasive and did nothing but complain about First Steps while she was here.

We have been referred to a developmental specialist, who has requested Ryan's birth records, as well as the detailed report from the resp. team (he aspirated meconium, wasn't breathing properly when he was born, initial apgar was 4, hands and feet were so dark they were almost black and he was whisked away to the waiting emergency resp team and then the NICU before I was even able to touch him for the first time.

The ortho said immediately he didn't think Ryan needed braces and that he would like to work with the new PT on Ryan's treatment plan. I spoke with his PA on Friday and she told me that the concern is that Ryan's extremely low muscle tone is that he may not have gotten enough oxygen during birth!!!

WHAT!!???!??! Why am I just hearing of this at 17 months old? My little boy is the absolute happiest baby in the world, he's just not walking or talking. His receptive language is very good, he's just starting to point at things, but we are making strides.

Any experience with this? This is why I've not been around here much, but I would appreciate any insight. Our next steps are an MRI, CT scan and a swallow study. If he is in fact, aspirating food/liquid, that would explain the pneumonia and respiratory issues.

Baby Birthday Ticker Ticker

Pregnancy Ticker

Re: I've not been around much....

  • I don't have any insight, but I just wanted to say that that's a LOT of information to get in such a short amount of time.  I hope you're able to start getting some answers and that your little guy can start making progress.  My t&p are with you while you guys go through all of the upcoming testing.
  • I don't have any advice but just wanted to say T&P are with you.

    I, too would be upset to just learn about the not enough oxygen at birth aspect. 

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  • That sounds so overwhelming! It can be a lot to take in - I know. ((Hugs))

    We sort of have experience - Kaylee is small and had low muscle tone (but not extremely bad) She didn't crawl until about 12 months and we were seeing an OT and PT in first steps starting at 1 year. She walked at 15 1/2 months.  She gagged too - she didn't move her tongue right when she ate, instead she just tried to suck everything or mash it with her tongue and couldn't get the food from side to side....

    She sees a developmental specialist at Riley. She's also seen a neuro geneticist  because of her low tone (we go back in the summer) and she sees a pediatric endocrinologist (because of her hormones/height). AND she's still FTT and underweight.

    My advice: Listen to what the Drs say, but don't stop trusting your own mommy instincts, and know they are good doctors and they are able to help you guys! And try to not "take it personally" it's not your fault, there's nothing you could have done. Your baby is happy and that's what counts most of all!

    I know the whirlwind of emotions all these doctors appointments and tests can cause.

    I'm here if you ever want to just talk or complain or even cry! You can find me on FB too.

     

  • ugh :(:( I feel so bad for you and Ryan.  Hang in there. hugs!!!!!!!

    I hope Dr E can help !

  • Sending T&P your way.  (((hugs)))
  • Definitely sending t&p!  It's so hard for me to read all this information and then to reconcile it with that adorably happy baby in your siggy pic.  You're so right, he is happy and loved, and that's the most important part. 

  • Praying!  It's the only thing I know how to do here!  ((HUGS))
  • imageinkygirl:
    Praying!  It's the only thing I know how to do here!  ((HUGS))

    I agree!  Lots of info.  I also agree with the comment to listen to the drs. but also trust your mommy instinct.  sending t&P!

    Baby Birthday Ticker Ticker
    BFP #2 11/4/12 EDD 7/20/12 missed M/C 12/13/12 @8w5d D&C 12/21/12
    DX 2/7/13 with an alloimmunity + for anti-paternal antibodies started Lovenox daily & BA
    BFP 2/16/13 EDD 10/28/13
    image

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