Calm Seas
Then end of August saw Nate pretty sick, in fact last year he was sick almost all the time. It was horrible for both of us. I am very please to say that for the last 4 months Nate has NOT been sick! wow!! It is wonderful, but how is this???
Nate no longer goes to the daycare center (this is with mixed emotions for sure!!!) He is home with Mommay 24/7
When Nate went in for his T&A and tubes in his ears he was still fighting off his chronic ear infection and after the operation he spent 2 rough nights in the PICU. He went into crisis right after the operation as I feared he would. Then when we got home he fought for his health for another 2 weeks. It was the longest stretch of being sick to date..over 26 days straight of sick Goober-Fish and stress dosing and very little sleep (not that I get much anyhow) for Mommay.
When we went back to see Dr.s Miller and Collins for his post-op follow up he was doing better but Dr. Miller did not want to have me send him back to the daycare until he was strong again. Well I just can't do it. He has been doing so much better when NOT around sick people. And because he has not been sick AND he has not been facing a crisis it may seem to you all that things are 'better' well....yes and no.
Yes,
because it is great not to have to worry about stress doses and extra medications and breathing treatments!!
No,
because POMC/SIM1 are genetic and as such they do not go away or 'get better'
This is what Nate's daily meds looked like in September, Not counting the breathing treatments
This is what Nate takes on a daily basis nowGoing out to eat with Bill the other day reminded me (again) how constant and driven Nate's focus on food really is! (I don't know if Bill noticed it or not, he was so very kind and it is a joy to have someone show that they LIKE to spend time with my child...)
Because I don't put Nate in situations that I already know may be a possible 'meltdown' for him we have more calm seas
This fight... this BATTLE with HUNGER, bothers me it hurts my heart all the time but for some reason I can deal with it on a daily basis....until something unusual happens. For example: if Nate is not feeling well and we have not been sleeping right or if he is "Wonky" and I am worried about whether or not I need to increase his meds....things like that when they pile up on me make me less able to deal with the constant 'waves' that hit the island.
So when we have 'calm seas' like we are enjoying right now I don't always think to share.
The issues that we have... the challenges that will NEVER END are still here... will always be here...Nate still faces challenges with his weight, his mobility, his immune deficiency,his sever obstructive sleep apnea,his daily dependance on steroids and hormone replacement therapy,his hunger, his sensory processing issues, his PDD/NOS and his inability to deal with change in his routine....but right now things like that...are just normal living here on the island.
Because these things are 'NORMAL' for us on the Island I forget to share the with you all....I forget that you don't 'see' the things we do day in and day out. I forget that you don't 'see' how much effort it takes just for us to get out the door on any given day. Nor do you 'hear' how many time Nate asks if it is time to eat. Nor do you 'hear' him snore/gasp for breath at night. You don't notice the panic that comes to my heart when he tips side-way on his trike because he is just not strong enough to balance himself. You may not notice that when he is in his bouncy house with HUGE smiles he is laying down because he has no balance and is afraid to fall. You do not hear the 'night terrors' he always seems to have just an hour after I have finally fallen asleep to be jolted away by his crying out. Or a million other 'normal' things that having a child with multiple disabilities brings.....but
to us....this is CALM SEAS
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