Thursday, April 30, 2009
This is a photo my cousin Sharon took when she came for a visit recently. After playing with the photo this is the copy she sent me. I fell in love with it and had to share!! Thanks Sharon!!
Kaitlyn just fell in love with her cousin! I haven't seen Sharon for a few years, our families sort of lost touch :o( Kaitlyn usually won't let people get too close, strangers make her nervous. However, the first thing Sharon asked when she walked in the door (I had Kaitlyn on my shoulder) was..."can I hold her"? I hesitated for a second but asked her to sit down and I'd hand Kaitlyn to her. This was the result...a number of minutes with both Kaitlyn and Sharon smiling and talking. In fact Kaitlyn wouldn't be quiet the entire time Sharon held her. She seemed to enjoy every moment...and she didn't choke!!!
Talk, talk, talk two chatty girls! I think fun was had by all!
Kaitlyn was checking out her cousin Owen!!! Yes Owen!! Sharon and I both named our first-borns Owen. It's so funny that we would pick the same name! Needless to say our families had lost touch for awhile!
Sharon and I! Can you see the family resemblance?
The boys all had fun too! Sharon's Owen is the same age as my twins. Three Little Monkeys Jumping on The Bed.....er trampoline!!!
Monday, April 27, 2009
Trying the floor out, but not willing to give up the chair! If his bum leaves the chair it might get snatched! (p.s. the red socks are in the garbage tonight...we are poor, but not destitute)
Some of the things MDA has helped us get for Kaitlyn are her cough-assist device, her Enteralite Infinity feeding pump (with accessories), and a corner seat (specialized seating-supportive from head to toe). Thanks MDA!
This is only a pic of the poster that will be distributed around our home town, where the concert will be held. MDA supplied the posters for the event.
Friday, April 24, 2009
We finally asked a bunch of questions during Kaitlyn's more recent hospital stay. (Goodness knows we were there long enough to ask several people LOTS of questions.) The result was a meeting with Kaitlyn's pediatrician, the RT's at our children's hospital, and the RT from our DME company to discuss Kaitlyn's ventilation. The result of this meeting is that Kaitlyn will now be properly followed for her ventilation needs.
We have had to increase Kaitlyn's pressures on her bi-pap again. She is now 20/3. The left side of her chest has taken a little dip over the past couple of months and she had started peridoxal breathing again. Peridoxal breathing means that as she breaths in her diaphragm expands and her chest falls, and on the exhale the chest rises. Typically this means that pressures need to be increased to help blow open the lungs, expanding the chest, so that Kaitlyn won't have to use her diaphragm to breath. The idea behind the bi-pap is that Kaitlyn allows it to do most of the work while she sleeps so that she can get some true rest and not have to work so hard to breathe.
This meeting allowed my husband and I to ask some questions and raise some concerns. Kaitlyn is dependant on Bi-pap, of this there is NO question. All the medical professionals involved would have to agree. She may only use it nocturnally (except when she has the common cold where she uses it 24/7) but without it she would get too tired to breathe after only a couple of days. She might not even make it through the first night as children with SMA have such low tone that they breathe too shallowly in deep sleep to ventilate their own lungs and they could even stop breathing! So our concern is at what point is she a candidate for a secondary vent? Our DME company told us that if something were to happen to Kaitlyn's bi-pap that they might not have the same unit to replace it with, and they may not have a machine capable of performing all of the things Kaitlyn's bi-pap does now. Then we would be without a bi-pap until ours got fixed!! This is really scary!
The next issue is if we are considering a secondary ventilation machine do we go with another bi-pap or do we switch Kaitlyn to a vent (LTV or some other similarly capable unit). A vent has far more options for ventilation than a bi-pap. It can handle higher pressures, it can be volume cycled rather than pressure, it has a lot more alarms, and can be used for invasive ventilation should the need ever arise! During illness the vent could be huge for Kaitlyn! It would allow her to remain home long after the bi-pap stopped working for her. The bi-pap only handles a maximum pressure of 30, of which Kaitlyn is using 20. When sick, if we use similar pressure increases as colds she has had just this past winter, then we would have to go as high as 26-27. This doesn't leave us a whole lot of pressure for emergencies!
It's unlikely that a vent will be approved for funding. Vents are much more expensive than bi-pap. We have also recently been approved for funding for a secondary cough-assist. I am ever hopeful that the cost of a vent would be weighed against the cost of a two week stay in PICU!! It's in everyone's best interest that we get the equipment Kaitlyn needs so that we can continue to manage her at home. So this is what we will be wishing for the next few months. (These things take time).
Otherwise, Kaitlyn has been fine. She has been making some advances in the way of speech. She is experimenting with a lot of new sounds. She uses a lot more words throughout the day now. Still no sentences or even close to it, but she is at least mixing some real words with the nonverbal communication that she has perfected!! We've NEVER had any trouble understanding exactly what she wants (her nonverbal communication is superb)...probably why she has gone so long without speech!! Yesterday she was a train..."CHOO-CHOO". Pretty funny ;o)
Today Kaitlyn "decided" that she was going to wear her new Dora PJ shirt all day!!! There was no way that shirt was coming off this morning without a WHOLE lot of grief! LOLOL We compromised on the pants. Doesn't she look proud of herself!?!
My Goofy boys acting all silly. They were blowing rude noises into my leather couch...which they thought was incredibly funny!!!
The weather has been so nice the past few days. Sunny and warmer! We have been going for walks after baths before bedtime. Just around the outskirts of our building, but it's better than nothing. This is Kaitlyn all clean and waiting to go outside.
Those of you that follow me on FB may have read that Alexander fell this week and split his chin wide open. He was racing up and down the hallway with Owen. They were each pushing a large truck, racing and making tons of noise! I was yelling at them to stop when I heard....CRASH! Then Alexander comes out of the hallway crying with a big split in his chin. Poor guy, it was too deep for dissolvable stitches, so he has six stitches that need to be taken out. More than likely he will be left with a permanent scar. Sorry for the picture quality, he wouldn't hold still!! (The stitches are blue).
Thursday, April 16, 2009
SO you might be wondering what's the big deal, why wouldn't you elect to save your daughter from future stress, pain, discomfort, physical and emotional trauma?? Well it's extremely risky choosing ANY surgery for a nueromuscular child. It also really sucks that we have to take our perfectly healthy daughter in and put her through more surgery. Ports also come with their own list of risks. And then we have Kaitlyn's tendency to clot. The last thing we need is for her to form a blood clot around this device and break off that close to her heart!!! Sooo....our next appointment is with haemotology for a discussion about blood clot control. Once we are reassured that we have a plan in place to deal with potential clotting then I feel like we will probably choose to place a port.
Monday, April 13, 2009
The Easter Bunny found them all. Kaitlyn got mostly clothes and a couple of teeny stuffed bunnies and a stuffed pink chick! This girl is nuts about stuffed animals, but they have to be animated by someone!! But the resulting giggles are worth the extra work to help her play! Owen and Alex got some CARS DVD character cars (they are nuts about die-cast cars, especially Alexander), some chocolate and goodies, new hats, Owen got a truck and Alex got a Bopper Ball. Everyone was quite happy with their gifts.
Kaitlyn likes to watch the boys playing on the computer. She can play her own games but it is getting so that she likes watching them play because she cannot play the same games as them! It's so sad sometimes as I feel like she's being left behind. The games out there for single switch are obviously not very challenging!! She gets too bored. But communication devices are extremely expensive and I am not aware of any funding porgrams that will cover communication devices.
Kaitlyn enjoying a taste of Daddy's bacon Easter Sunday. She thought it was pretty funny to bite down hard so that Daddy couldn't pull the bacon back out of her mouth. Good thing she didn't bite a peice off!
Monday, April 6, 2009
We measured how tall the kids were the other night. Owen is almost 44 inches tall and four years old. Alexander is 35 1/2 inches tall and 2 years. Kaitlyn we have to try and stretch out her contractures in her knees to get something even close to her full height!!! She measures 37 inches tall and 2 years!!! She's always been bigger than Alexander but WOW! I cannot believe how tall she is! Kaitlyn doesn't get haircuts, but i thought that I would take some pics to document her growth as well.