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Raising Special Needs Kids Raising Special Needs Kids

Samuel update

Posted by on Mar. 31, 2014 at 2:31 PM
  • 5 Replies

Well today was another frustrating Drs appt.  His Dr just keeps saying something has to be wrong for a baby to be so sick and working to breathe.  My efforts are paying off with our home treatments so we are avoiding the hospital for now.  His Drs has made me well aware that he can go into respiratory distress very quickly so yeah Im not sleeping.  Tomorrow we go for a barium study.  Then off to pulmonary where they will run test such as CF, rule out lung damage, asthma etc.  It seems like the list is endless of what could be wrong.  Then we head to ENT where he will be scoped.  The Dr said he could have Laryngomalacia.  Most babies outgrow it and other require surgery.  The scope will determine if and the severity of it.  Its basically that the laryngeal is malformed and floppy causing his breathing issues.  Im just angry and so sad.  I know you ladies have it so much worse than I do and I feel guilty complaining but my heart is full of sadness.  When I got pregnant with Samuel it wasnt the best timing.  I was actually going on birth control since I was just over whelmed with Ryan and all that he requires.  My OB said to wait for my period and then start.  I never did get my period...I was already pregnant.  I was freaked out yet happy.  I remember Samuel being placed on my chest and he looked right at me and I looked right back at him  It was almost a moment of so this is what other moms experience.  For a month I had this easy, fabulous baby.  Then the ball dropped and he's been so sick ever since.  I know he can or will get better.  Whatever this is causing him to be so sick I will face it and fight for him as I fight for Ryan.  But god I can't shake this sadness.  Why?!  Why is my baby so sick and why can't I have answers today.  I try and focus on what I have to be grateful for.  Im grateful that though all of this I can just look at Samuel and he will look right back at me and smile.  Its priceless.  Even in the ER the nurse thought she didn't count his respirations correctly that were over 80 since he kept smiling.  He's my little warrior.  He makes me realize I have to be like him and fight.  I have to put my sadness aside and smile.  So for today I have no answers as to what is wrong with my baby...maybe tomorrow...maybe not.  But for today I will do as Samuel does and SMILE.  

by on Mar. 31, 2014 at 2:31 PM
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Replies (1-5):
arkansasmama08
by Gold Member on Mar. 31, 2014 at 4:11 PM
1 mom liked this
Good for you mama! I know the wait and the unknown is scary. Hopefully it will be something relatively minor that can be managed by meds.

good luck tomorrow and let us know what happens.
arkansasmama08
by Gold Member on Mar. 31, 2014 at 4:14 PM
1 mom liked this
Oh, and never feel guilty for posting in here. Some have worse conditions, some have easier. But at the end of the day, we're all just parents trying to do the best we can and help our kids with whatever they are dealing with. Vent, cry, yell, anything you need to do mama. Its what we're here for.
Momof4AEMW
by Gold Member on Mar. 31, 2014 at 5:22 PM
1 mom liked this

I agree here!!!

And OP, I'm so sorry to hear about Samuel.  I hope you get some much needed answers tomorrow and that all is going to be ok.  I am so happy to hear doctors are taking it seriously and trying to get to the bottom of things for you.  I know it takes time, and that stinks, but thank goodness they are trying and not disregarding your concerns.  Hang in there, Mama, and keep that smile up!!!  HUGS!! 

Quoting arkansasmama08: Oh, and never feel guilty for posting in here. Some have worse conditions, some have easier. But at the end of the day, we're all just parents trying to do the best we can and help our kids with whatever they are dealing with. Vent, cry, yell, anything you need to do mama. Its what we're here for.

 

Bluecalm
by Silver Member on Mar. 31, 2014 at 10:15 PM
1 mom liked this
Hugs, mama.I'm sorry you didn't get answers today but it's good that the doctor took his condition seriously and lined up appointments.
darbyakeep45
by Darby on Apr. 1, 2014 at 4:53 AM
1 mom liked this

Totally agree here...big hugs mama!  We are here for you:)

Quoting arkansasmama08: Oh, and never feel guilty for posting in here. Some have worse conditions, some have easier. But at the end of the day, we're all just parents trying to do the best we can and help our kids with whatever they are dealing with. Vent, cry, yell, anything you need to do mama. Its what we're here for.


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