So it goes without saying that we want to get rid of the O2. The cumbersome cords for the pusle oximeter, air tube and tank slow us down, irritate him and prevent easy travel. That being said, its tough for us hypersensitive parents to break the chain.
Cash is constantly pulling on the nasal canula, rubbing his nose and getting ticked off by the uncomfortableness of it all. I couldn't imagine. On the flip side, Kim, Savy and I are always worried about the tube getting pinched, the pusle ox having power, the tank leaking or falling etc... Its a pain in the rumpus!
We are trying to keep the O2 off Cash as much as possible, without tiring him out. Usually thats about 5 hrs a day. Sometimes when we dont have OT or PT we can pull off 8 hrs. We really need to get him to a full day before July 5, our next OCRG test, but thats probably not gonna happen. It is what it is.
To give you an idea, think about how much it takes to move a newborn; all the stuff you gotta load up in the car. All the prep thats needed and checklists to run through for a "normal" kid grows by 50%.
So you got the usual stuff; baby bag and all the stuff in it, strollers, car seats, toys, pacifier etc. Then add to that an air tank, a pulse oximeter, the cords for both, a tank carrier, placement of it all, proper placement of the nasal canula, tape for the nasal canula, the air tank key and make sure there's enough O2 in the tank to last the entire trip. Then while traveling, hearing the monitor beeping will drive ya nuts! Like I said, a real pain. I couldn't imagine those who must do more than us, with wheelchairs etc.
God bless them all.
My youngest brother is getting hitched next weekend, and we are making the trip down to the ceremony, but Kim and the kids are coming back immediately afterwards strictly due to the O2 and pulse ox monitor. The monitor beeps everytime he yawns, needs to burp, passes gas or the sensor is hardly touched. This amount of beeps would drive a hotel guest crazy, and since the volume cannot be lowered, it would keep not just us up all night, but our hotel neighbors as well. So it goes, just gotta cope.
My point is not to whine about the situation, but to explain why we gotta get him off this O2 assistance. As soon as we do, we are gonna start making some road trips. I'm seeing a tank free Cashmonster in Austin, eating at a taco trailer and walking south Congress. Maybe taking a train ride at Zilker. Going to the Houston zoo or seeing the coast for the first time. I cannot wait to explore the world with him, introducing him to more than just a doctors office, hospital or our living room.
The time will come when we can sleep all night, wake up refreshed and ready to take on his other challenges without being exhausted from the rough nights sleep before. The time will come when we can have someone watch him and not be scared by seeing the extra baggage he comes with. The time will come. Patience. Breathe.
I slept for shit last night. Ha!
On the bright side, Cash loves to play. His nurse Ms. Rhonda has taught him to play peek a boo. Here is a quick clip of him being a ham.
Friday, June 22, 2012
Wednesday, June 13, 2012
Let The Love Flow
Well I'm happy to report that the family is finally getting into a stable routine, much happier and learning how best to cope with the challenges ahead! This post will all be rainbows and butterflies. Thank God!
So since my last post we have had 3 doctor, 6 therapy and 2 eval appointments for Cash. In total, starting next week we will have 16 therapy and 3 doc appointments scheduled each month for at least 2 years, which is more than a part time job by itself. Thankfully we have the greatest nurse to help me, and its summer for Savy allowing for more flexibility.
The oxygen situation has improved tremendously, and after our next test on July 5th, I'd be surprised if he's still needing it, at least not more than an as needed basis.
Cash is such a strong little boy. He goes through therapy fighting the whole way. Its humbling to say the least. So much character in such a little man. His smile is beautiful, and he is starting to gigle a little bit. Oh, and he gives us kisses. The sloppiest, wettest goodness anyone could wish for! I admit, I cried like a 5 yr old little girl the first time he did it. There was a time I wasn't sure I'd ever get it.
Regarding the therapy, I must give a huge thank you to our friend Brenda Hudson for getting it going for us. She took him on as her PT patient then got us our OT as well! She is a big part in all the little victories we have experienced recently. Thank you Brenda!!
Lets do a recap of our Victory list shall we...
Much improved head control
Eats like a champ, up to 6 oz now
Starting on cereal
Found his hands
Better eye tracking
Smiles galore
Ending 2 meds next week
Discovering his personality
Knows his mommy, daddy and big sisters voices
Smiles more with Savy than anyone
Rarely spits up
Lung strength is way up
Can turn his head when on his stomach, when he gets pissed, not all the time, but still much better
Sleeps 10+ hrs each night with one feed usually around 3-4am
Loves mobiles
Holds and shakes his rattle when interested
One other thing, my boy is handsome. Seriously, this kids eyes are more blue than the Carribean. He has slightly wavy dirty blonde hair. A nicely shaped nose and perfect puffy lips. I'm proud. What can I say?!
He loves to be read to, but you better make sure he can see the pictures. He is as strong as an ox. I aint kidding, this kid can almost do pullups!! In a month or two, with all this working out he's getting even stronger.
Momma is fully back to work, and I'm, well, busy. I do wish I had been able to keep the online store we purchased for me to work from home, but as Cash' appointments piled up and some other circumstances arose we sold it. In due time I will be working as Franek Consultings meeting planner, marketing/sales. Hopefully that will happen by the spring.
Savy is at camp, and each day I get the mail hoping for a letter, but no go so far. I sure do miss her, but I'm guessing she's having the time of her life. No time for dear old dad.
Last but not least, we have not forgotten the other babies in the NICU, as well as their parents; hope to start working on our foundation soon.
Thats it folks. Told ya nothing but rabbit farts and fairy burps this go round. Its all good at mi casa.
Oh, and I'm joining the church choir in August. Time to give back.
Peace out yall!
So since my last post we have had 3 doctor, 6 therapy and 2 eval appointments for Cash. In total, starting next week we will have 16 therapy and 3 doc appointments scheduled each month for at least 2 years, which is more than a part time job by itself. Thankfully we have the greatest nurse to help me, and its summer for Savy allowing for more flexibility.
The oxygen situation has improved tremendously, and after our next test on July 5th, I'd be surprised if he's still needing it, at least not more than an as needed basis.
Cash is such a strong little boy. He goes through therapy fighting the whole way. Its humbling to say the least. So much character in such a little man. His smile is beautiful, and he is starting to gigle a little bit. Oh, and he gives us kisses. The sloppiest, wettest goodness anyone could wish for! I admit, I cried like a 5 yr old little girl the first time he did it. There was a time I wasn't sure I'd ever get it.
Regarding the therapy, I must give a huge thank you to our friend Brenda Hudson for getting it going for us. She took him on as her PT patient then got us our OT as well! She is a big part in all the little victories we have experienced recently. Thank you Brenda!!
Lets do a recap of our Victory list shall we...
Much improved head control
Eats like a champ, up to 6 oz now
Starting on cereal
Found his hands
Better eye tracking
Smiles galore
Ending 2 meds next week
Discovering his personality
Knows his mommy, daddy and big sisters voices
Smiles more with Savy than anyone
Rarely spits up
Lung strength is way up
Can turn his head when on his stomach, when he gets pissed, not all the time, but still much better
Sleeps 10+ hrs each night with one feed usually around 3-4am
Loves mobiles
Holds and shakes his rattle when interested
One other thing, my boy is handsome. Seriously, this kids eyes are more blue than the Carribean. He has slightly wavy dirty blonde hair. A nicely shaped nose and perfect puffy lips. I'm proud. What can I say?!
He loves to be read to, but you better make sure he can see the pictures. He is as strong as an ox. I aint kidding, this kid can almost do pullups!! In a month or two, with all this working out he's getting even stronger.
Momma is fully back to work, and I'm, well, busy. I do wish I had been able to keep the online store we purchased for me to work from home, but as Cash' appointments piled up and some other circumstances arose we sold it. In due time I will be working as Franek Consultings meeting planner, marketing/sales. Hopefully that will happen by the spring.
Savy is at camp, and each day I get the mail hoping for a letter, but no go so far. I sure do miss her, but I'm guessing she's having the time of her life. No time for dear old dad.
Last but not least, we have not forgotten the other babies in the NICU, as well as their parents; hope to start working on our foundation soon.
Thats it folks. Told ya nothing but rabbit farts and fairy burps this go round. Its all good at mi casa.
Oh, and I'm joining the church choir in August. Time to give back.
Peace out yall!
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