It’s the little things in life that make all of the difference. 
I finally have a chance to sit down and take a moment’s break. Oh. Did I tell everyone that WE ARE HOME?!? Yup. Reed and I grabbed Parker and we ran like three bats out of hades and here we (finally!) are! I’m showered and nursing my newest batch of ginormous killer hives. But at least I smell good.
I have boxes and boxes of medical supplies that go with our latest medical technology that need to be put away. Suitcases and diaperbags that need to be emptied, washed and stored. I have a new Trache Station to set up. I’m overwhelmed, overtired but oh so thankful to be home. So, so thankful to be able to have Parker home with us again. I’m going to save the stress for tomorrow and just enjoy the blessing of tonight.
We have received many, many emails and requests asking about things that Parker needs. I feel greedy in making a list, but there have been so many people asking, especially about the portable sat monitor, so here goes:
First, PLEASE know that above all else the prayers that have been said and are still being said are the most beautiful of all gifts. I know I have said this before, but we believe so strongly in the power of prayer and have felt the power of the prayers that have been said for Parker.
1. The portable Pulse Oximeter that I have mentioned in former posts is a Nellcor OxiMax N-65. This isn’t a finger monitor. It uses the sensors that wrap around Parker’s foot. I’m not sure that Parker would stay still enough to use a finger version. I haven’t had time to price these out online, so I have no idea of the cost, etc.
I think our insurance is going to provide the liquid O2 tanks for our outings with Parker. At least there have been talks about it. :::::::::keeping our fingers crossed:::::::
2. Just the sight of a temperature probe that goes in the ear or one that goes under the arm has started sending Parker into total fits of despair. I know this sounds really strange, but it is true. We have been needing to hold Parker down while the other person checks his temp. So we have been thinking about looking into a thermometer that can either run across Parker’s forehead or can just be aimed in his direction.
3. Simply Thick in the Nectar consistency. This brand is per the orders of the GI specialist at Primary’s. Because we now know that Parker has been aspirating when he eats and drinks, we must add this thickener to all of the liquids he takes by mouth. www.simplythick.com
And finally: Because of Parker’s allergy to milk and milk products he will no longer be able to drink Pediasure. Remember how I used to moan about the cost of Pediasure? I wish I would have known how good we really had it. Imagine my total shock when I discovered that a FIVE DAY SUPPLY of the Neocate 1 Plus would now cost us ONE HUNDRED AND THIRTY DOLLARS. Yeah. For less than a week’s supply. Dang good thing Parker is so incredibly cute, eh? lol!
Enjoy your night. I won’t even ask what’s up with the hives. Ooops. Guess I just did.
Glad you’re home, glad things are looking up, wish I had a million dollars to send you.
Any luck with the Medicaid?
Praying always.
Hallelujah! I’m glad you all have returned to your own abode with your own shower and your own laundry facilities.
Is there any way Parker is eligible for WIC? They would buy the formula because I’m assuming the insurance won’t think about it even if you go the pharmaceutical route and try to bill it as a drug because it does require a prescription. I’ve BTDT with the $700/month formula. I’m praying actively for God to provide that for Parker QUICK!
Enjoy your own pillow and your own bed.
Oh, Tammy, what wonderful news!! I’m glad I checked in one last time before bed.
Keep hugging that boy of yours for us, and we’ll keep the prayers coming.
“Home again, home again, jiggedy jig” and so happy to hear it. I’ll be emailing.
Love, hugs and prayers always. ox
Ahh…I was gonna mention WIC as well…They paid for Jophies and my last 2 fosters sons up until they were 5 years old…ANY formula and we got around 6 cases per month PER child which was based on the doctors script….Oh and 6 cases is equal to 24 cans when you get it this way..
Trina
Sooooooo glad you’re home!!!!! Many, many hugs
Nope. No Medicaid or WIC…..even with the trache.
But I am calling to day to see if our grant money will be able to be transfered from Pediasure to Neocate. I don’t think there should be a problem.
I am so glad you all are home! The Lord is sure answering our prayers.
My experience with the temporal thermometers are not good! They haven’t been very accurate for us, and they are actually difficult to take. Maybe we just have a bad brand though.
Praise God that he is home and that you have clean underwear! I will continue to pray for you guys!
So glad you are home! Please know our prayers continue. Grrrrr about the medicaid and WIC! Give our best buddy a big welcome home hug from us.
Barb and Michael
Jumping for joy that Parker is HOME!!!!!! Continued prayers for the insurance to come around and see and fill his needs. Prayers for continued good news with Parker’s health… and for your hives to quit.
Sending you loads of cyber hugs (((((((HUGS))))))))
I’m going to be getting my sewing machine set up for Parker Projects next week.
Love, Kei
I’m very glad and thankful that all of you are back together at home ~hugs~ Prayers will always go on for blessings and good things to keep coming your way, esp. for Parker.
Love from Anna
I’m so glad you are all home!!!
Glad you are home and hope it is for a long spell this time!
Talk to Dr. Conner about your insur trouble, she has a SS worker that works with HER office that might be able to help….good luck….
Twitter: nehimomma
says:
there is a place called NPS which is near the main post office and the main LDS church distribution center. They often times sale things that they purchase form UPS that were undeliverable. I have seen that formula (& most of the other specility formula) there for only a dollar a can (I don’t think they know what it is lol). It’s worth a try. If you go in the building with all the tools, try the other building across the street. And they do take coupons there too, I got lots of stuff there for cheap. Just check exp dates.
The Wic thing stinks (were in the same boat, people keep suggesting to me wic and we have to have 3 more kids to qualify lol). Has he qualified for SSI yet???
They do have under the arm ones thermometers that will give you the reading in 8 sec, that may be better than nothing, if the forehead one’s don’t work (kind of a bummer, I wanted to buy one.)
Yeah for clean underwear!!!!
If you go to the NPS store, check the expiration dates. They often sell expired stuff. I don’t know if Neocate goes bad, but you just want to check….
Also, be prepared for a chaotic, messy store. But cheap. Man. I’ve gotten some great stuff there.
YAY Mr. Parkey is home. Sending your rotten insurance company a kick in the seat of the pants. SO sorry that even that is a struggle. It would be enough just caring for the needs of Parker, let alone the insurance nonsense. Sending you love.
LOL – My BIL used to work at NPS – it’s definitely a dive
Tammy – whooo hooooo hooooo – can you hear me cheering?? I am SOOOOOO happy that you are home!!!! Praying that your insurance company can extract their heads from their – well – you know what – and come through for Parker. I’m hoping and praying that you will be able to get the things Parker needs for him!
Hugs!!!!
There’s no place like home, is there? So glad you all are finally there.
glad to hear the test went well and you all are home fine. will keep you all in my prayers. give him a hug for me from indiana.
Welcome Home Sweet Parker! (and Mommy too!) We will surely be keeping you both in our thoughts and prayers!
wonderful news! I will go a-searching for you….many many hugs.
WOW that’s wonderful that your home – Praise God!
I am so glad your finally there – as for the things you need, LOL I have no idea but if there’s a fund or something I want to donate, or maybe run a auction for a carrier with everything going to you all wonderful people!
BTW no rush but hope you got the Pod!
I’m glad your home. Please know there is a much cheaper way to thicken liquids. Elainah was on “Thick It II” for 19 solid months. It comes in a big can, you add just a few teaspoons and voila! The stuff you mention is sooooo expensive, but the stuff we used was just $23 a big can. That size lasted us three weeks at a time.
Elainah is lactose intolent, proven by blood work, our doctors assured us that Pediasure was not milk based. My goodness…I think we will need to switch too. I am going to talk to the pharmacist tomorrow.
I hope you can get the other stuff you need. Many, many, many hugs.
p.s. I have a suction machine you can have as a back up if you want it. Just send me an email with your address and I will mail it out to you as soon as we are moved.
It isn’t a portable one, but it is a hospital grade machine. Let me know….
Hi Tammy!
glad to hear you are home. We buy the thicken up. I have started using cereals (baby cereals) that I use a hand blender to whip and thicken much of izzy’s drinks or food. There is a program in most states (here in OK called TEFRA) and it covers medical costs above and beyond insurance costs. It has helped pay for a few things for Izzy.
Still praying for you guys!
I stumbled onto your website when I googled pulse oximeters. I am a sales rep for a pulse oximeter company and could offer you a handheld pulse oximeter to borrow as long as you need it. Please email me a way to send you the unit and I will send you one with sensors included. I also have a 3 month old baby and couldnt resist helping your cute little boy.
John
http://www.angelfire.com/biz/BHOdistributors/
baby gard a skin thermometer that is considered very accurate–with a memory and can be set to do repeat temps at certain periods of time. the link above should work. it cost is 24.95 plus shipping! i remembered that i came across a thermometer that was placed on the belly would give reading to a monitor you carried, when i had my baby, but i did not get it. i kept the link, but the website doesnot carry the product any more. so i googled skin thermometers, and found this. the pic shows it atttached to the diaper. so see what you think about it. hope this helps–noran
so so glad to hear you all are home! I really hope your ins. co comes through this time!
Tammy,
I was online looking at the Neocate and found if you order it here, you get $25 off your first order. One case of Neocate One Plus is $86.00 a case which says it is 10 packets x 100g. Is this a good price Tammy? I’m thinking if everyone you knew ordered one and had it sent to you we could all save the $25 and it would only be $61 a case! How much does he need a week – in terms of what this case would cover for you?
In any case here is the link.
http://www.shsna.com/promotions/orderneocate/index.html?utm_source=google&utm_campaign=order%2Bneocate&utm_ag=neocate%2Bnational
Let us know what we can do to help with this.
Julie, Emily’s mom
I actually have a can of something called Thick and Easy that I bought anticipating all of this. Unfortunately, Parker’s GI insists on the Simply Thick. Simply Thick is also what they use at PCMC.
Parker can eat the following:
Neocate with microlipids
Pedialyte
White rice cereal
yellow squash
apple juice
And that is it. We have some appts. with allergists next month. sigh…..
It really is the little things that make all the difference, Tammy. Sometimes, the smallest gesture can mean everything.
I’m so, so glad you’re home. That’s a huge thing.
Darn, I was hoping you could try the other product. Maybe we a plea to the manufacturers of Simply Thick would get you some???? Oh my, Parker does have a very small selection for his diet.
I’m so glad he is home…I sure hope you can get some of these things you need for him.
Much love from Elainah and I.
SO GLAD YOU ARE HOME…NOTHING BETTER THAN THAT…..
HOPE PARKER IS FEELING WELL….
LET US KNOW IF WE CAN BUY YOU A FEW CANS OF THIS “gold”…
PLEASE SEND US INFO
BYE IRENE AND AVI