I got an e-mail from the HTC Nurse on Friday that she had Connor's new numbers- and to CALL HER. Oh Crap- oh jeez! Steeling myself for the bad news, I jog down the hall way at my work & duck into a closet to call since we can't use our cell phones on the floor...
I give her a call & she answers right away- uh oh, she's waiting on me... ugh.
I tell her it's me, and she launches into the current data- and it's not bad news-- it's actually fantastic!!
Hot Dawg!! Connor is finally getting 76% recovery off his 200% replacement at the 45 minute mark!!! This is astronomically WONDERFUL! And to boot, he also again has an unmeasurable inhibitor level on the BU scale.
It has been over a year since either of these has happened... we may actually be on the right road to beating this thing.
As for the unmeasurable Inhibitor-- all this means is that with current testing methods, there is no way to know exactly how much inhibitor activity there is-- but what little there is, works very efficiently. Connor has no factor left in his system when we check at the 48 hour mark, and 45 minutes after we dose to what should be the 200% level, he only has 76% remaining... it doesn't take much to do the damage.
It is also Spring- that time of year when Mother Nature has menopause issues and it can be warm one hour and freezing cold the next. This past weekend was one of those- and I woke up with a budding Migraine headache. I asked Shawn to please take the boys outside for a half hour so I could get a shower in peace, this being around 11 a.m.
I commenced showering, and then on to puttering around the house. Then as time advanced, I moved to working on the kitchen, (headache has been resolved by this time) and getting snacks since Cousin Joey, Grandmom and Aunt Liz has shown up.. everyone is in the back yard but me!
All the boys are climbing, chasing & creating general toddler mayhem in the unseasonably warm spring day- getting the crazies out since the next couple days are promised to be frigid and icky.
The kids are playing, Shawn is doing yard work- and I am having blissful housework time to myself.... yes, I did say blissful.
No naps today, or atleast the normal form- but about 4:30 (I love that man of mine- my half hour turned into the whole day!) the various relatives leave and the boys come inside to get cleaned up and rest up a little- and Tyin passes out at 5pm. He wakes up at 6 pm quite grumpy and unhappy and limping a little.
Now on to the title of this post- Thankfully this is Factor day-- Shawn is already mixing the vials when Tyin wakes up... (Connor never did take a nap- he passed out during factor! LOL)
Tyin said he has an Owie- and I sit him down and try to figure out where he is saying he has one... Tyin eventually gets his point across when I manage to grab the hurting spot as I am trying to inspect his appendages... OW Mommy- your squising it! It is a bruise forming on his lower shin just at the ankle level but not the ankle. It's already a pretty good size- about the length and width of my thumb- and showing that blue color of a growing bruise- and a goodsize lump that most hemo-families are familiar with.
"Oh Crap" I exclaimed- and Shawn, without missing a beat replied "Double dose then?"
Later on, after factor and tylenol- I overheard a conversation between Connor and Tyin.
Tyin: "Connor, I gots a booboo."
Connor: "Let me see it Tyin..." (Tyin raises his pants leg to display said booboo)
Connor: "Wow Tyin, thats a good one!" "I gots a booboo too..."
Tyin: "Let me see it Connor.." (Connor hikes his pants leg to show his knee bruise that is a few days old and changing colors)
Tyin: "Nice colors Connor!"
Oh the fun of being a mom, and of having boys-- and the interesting twists you have in a bleeder house.
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Wonderful item- works well for twins too
Pros: Easily Assembled, Fits two, Good value, Fun, Lightweight, Safe, Sturdy, Lasts well with use
Cons: Has a tendancy to mildew, Difficult to Dry
Best Uses: Bathing, Infants, Bathroom Safety, Toddlers
Describe Yourself: First Time Parent, Mother of Hemophiliacs, Parent Of Multiple Children
We first purchased this tub when our twins had outgrown the infant tub, but were too small to sit up unsupported. We like this tub because it is inflated all around- even the bottom. Our boys have a severe bleeding disorder called Hemophilia- and we were very concerned about bumps & bruises in a big tub. At this time, they are 20 months old, and we are not yet feeling safe enough to begin using the big tub- they LOVE to BOUNCE in the tub- so we are getting our second of these. Our first has finally sprung a slow leak after a year and a half of heavy use. This tub also works well with both of the boys in it at the same time.
HIGHLY RECOMMENDED ITEM!
If I can finagle it, I will be there EARLY on the first of November & come back home on the 4Th. I am still hoping my sis can come down- if not, then maybe next year.... and now off to play Bookworm deluxe- while the boys are sleeping.
I, on the other hand- haven't been really seeing much out of my left eye for a bit now. Doc said that was because the astigmatism was waaayy off. I will wait for the new glasses and see what he has come up with. something like 20/25 & 20/50... anything would be nice at this point.
I also have Keratikonus and can't spell it- but the treatment is hard contacts- and that is truly horrible with my allergies! Plus they are much more expensive than the glasses I use... just can't get the best vision with glasses any longer.
On another note- the boys have had hand, foot & mouth virus this weekend & week. Connor was the last to get it & we are going to the pediatrician this eve to see if they can give me something for them for a sore throat. Even Tyin still favors not eating some stuff- and picks at his Hotgog.... that says he is still not 100%...
off I go, they are calling for me!
What the heck keeps beeping in the house??????
anywho-- off I go to search for beeps- and to get a shower after amusing children!
ps- how do I get a counter for this blog anyways??
Here goes-- The boys are 16 1/2 months old now- and darling!
OMG I wish I had so much I could give them! a fenced in yard & a safe play set with that rubber stuff to fall on... this will happen in time- but it would be nice if I won the lottery & we could just go out and buy a new home, mini-van & accesories!
Our car is coming up on 194000 miles here in a few! (the truck is not yet paid for, so another vehicle has to wait!)
I got curious about who was still left out there on the west coast from the past- so I signed up for a "classmates.com" membership-- stupid me! Well, I found out who was out there- and realized that although it was nostalgic, I really didn't want to leave my info out on a site and feel like I had hung my tushie out the window with my pants down- so I deleted it..
It seems that every once in a while, I remember some of the good from that time and I want to find it again-- cool people & fond memories.... then I remember what it was really like, and I have second thoughts! UGH!
for safety reasons I always put that I am in Texas and list nothing about my family!
Anywho- that lasted about 3 days-- found that Mike McClure, Dave Jackson & Shannon Hosier are still out there, but didn't say hello... only Dave Jackson let me see he had stopped by to see my profile so I got the picture quickly with the others.
The boys' resistance (inhibitor) to their hemophilia medication is doing good- going away.. this means we are only having to stick them every other day...
This will never decrease until they get older and on their own.
They are growing in leaps and bounds-- I had to e-bay some summer clothes for them this past week!
I am just buying 18 month clothing right now, Tyin fits this size well except for pants- and I am just supplementing it with the 12 month size stuff as nessesary.
Connor finally got over 20 lbs and we turned both the car seats around about 3 weeks ago. This seems to help a TON with the guys riding in the truck-- they can see what is happening MUCH easier now!
Shawn put lattice & a gate on the front porch, so we have an outside play pen- this is especially helpful since his mother can't get around well and until we get a fence for the back yard (actually, just the sides of the house) she wouldn't have been able to safely take them out... (and how we came to put lattice & a gate is another story along that very line!!!)
This is working well for now, but might change when we get the storm door replaced. It was ripped off during the last windstorm we had- broke the jam & everything!
We are going to be participating in the walk for Hemophilia in June- so I will be sending out e-mails requesting donations if anyone is willing- we are trying to raise money for the kids to go to camp this summer... our boys can't go until they are 6, but the Hemophilia foundation of Maryland sends all the boys who apply, fully funded to a camp where they are with other boys who have the same disorder- and all are able to have a normal and fun time for a while.
As for me- still working at the bank... life outside the bank is much more fun to talk about.
this is all for now- ask a few questions and see if you can get me started again?
And they should have to have two infants in one bedroom in order to give advice to the parents of that same situation!
Put the boys down in a staggered bed time and let them go to sleep in their cribs-- stupid doctor doesn't think!! Put one down and he will go to sleep-- bring the other up an hour later to let him put himself to sleep and you will wake the other one... DUH!
Maybe we can try them at the same time... ugh.. this is going to be fun.