This girl has the best grin!
Did you catch the symbolism of the tulips?!
Sunday, June 3, 2012
Saturday, June 2, 2012
2 Things
1. I found Abby a Hello Kitty lollipop that is shaped like a lipstick and has a lid. She loves it and it's easy to stash in her diaper bag for when we're out and about...like at Caleb's graduation!
2. This is a foldable water bottle, but we are using it like those applesauce or baby food pouches that are popular these days. Abby LOVES eating from those pouches and eats a lot more when she uses them, but they aren't very high in calories like she needs. I put my own "doctored" purees in one of these and she sucks it down! Plus, it has a picture of a dog on each side. Abby can sign (and SAY!!!!) dog to her little heart's content.
It's great for eating at restaurants because she can do it on her own...unless she gets bored and starts squeezing the pouch so that food squirts everywhere. Then it's not so great.
The feeding therapist at JHH had never seen this before and loved the idea. She's going to share it with other families who may be in a similar situation.
**This is NOT a sponsored blog. My mom bought some of these pouches for the kids at Easter, and I repurposed it to become a feeding pouch. True story!
ENT results
Sorry I've been delayed in telling you the results of Abby's surgery. I worked all day Friday and spent Friday night cleaning up after being away from the house for two days! So, here are the results:
* The airway looks good, and it is growing....sloooooowly. It's just really little. But, there was no granuloma or scar tissue to take out, so that is good news.
* The right ear was draining again (after just a few days off of drops), so he took her right tube out and cultured the drainage. Since something is obviously wrong, he is hoping to figure out what the infection is and treat it once and for all. The left tube still looked good, so he left it. While not having a tube could affect her hearing in her right ear, we're hoping that she will be able to compensate with her left until we can give the right some time to heal.
* Dr. T. manually pulled her jaw forward (Ouch! Glad she was under!) and saw that it gave Abby's airway a lot more room. With that, he is now in agreement with our jaw surgeon that a jaw distraction would help her. They disagreed before, which was a little disconcerting for us.
* We will be moving ahead with the steps that need to be taken before the distraction can happen. This is kind of crazy, because we were originally told that Abby wasn't stable enough to even be a candidate for distraction. Look how far she's come!
1. Get Abby off the vent!!!!!! This is the first thing that will hopefully happen very soon.
2. After she's been successfully off of the vent for about a month, we will begin capping her trach during the day. This is when we put a little plug in her trach so that she is forced to breathe out of her mouth. We're not sure how she'll do with this, but our ENT seems to think she'll progress very quickly.
3. Once she is capped successfully during the day, she will go in for a sleep study capped to see if she is having any obstructive sleep apnea (where she stops breathing because her tongue is too big for her small airway).
4. If the sleep study is clear, we may be able to avoid the distraction. If it shows apnea, we will go ahead with the distraction to give her airway more room.
The distraction isn't a surgery we take lightly. It is a major surgery that involves breaking the jaw in two places and implanting metal rods. There are external screws that we will have to turn for a month to lengthen the jaw, and it is described as very painful. :( This is a relatively new surgery, so doctors are unsure of long-term affects to the jaw and teeth.
So why are we even considering it??? Not doing the distraction would mean waiting for Abby's airway to grow enough to maintain proper breathing while she is sleeping. This could take a really long time and would mean having a trach for an indefinite amount of time. Having an opening that leads directly to her airway drastically increases Abby's chances for infection, so we want to get the trach out as soon as we can.
That's where we are right now. Next step: VENT WEANING!!! We are going to pulmonology next week and are going to push to move forward with it. Our ENT is also going to have a "she's ready" conversation with our fabulous pulmonologist...who is sometimes a little overly cautious!
Please pray that our pulmonologist gives us the ok to wean off of the vent, and that Abby can get into MWPH quickly. (Since it's a "voluntary admission," it's sometimes hard to get in.) Also pray for wisdom for us as we begin to seriously research the distraction and make a decision about what to do with her airway.
* The airway looks good, and it is growing....sloooooowly. It's just really little. But, there was no granuloma or scar tissue to take out, so that is good news.
* The right ear was draining again (after just a few days off of drops), so he took her right tube out and cultured the drainage. Since something is obviously wrong, he is hoping to figure out what the infection is and treat it once and for all. The left tube still looked good, so he left it. While not having a tube could affect her hearing in her right ear, we're hoping that she will be able to compensate with her left until we can give the right some time to heal.
* Dr. T. manually pulled her jaw forward (Ouch! Glad she was under!) and saw that it gave Abby's airway a lot more room. With that, he is now in agreement with our jaw surgeon that a jaw distraction would help her. They disagreed before, which was a little disconcerting for us.
* We will be moving ahead with the steps that need to be taken before the distraction can happen. This is kind of crazy, because we were originally told that Abby wasn't stable enough to even be a candidate for distraction. Look how far she's come!
1. Get Abby off the vent!!!!!! This is the first thing that will hopefully happen very soon.
2. After she's been successfully off of the vent for about a month, we will begin capping her trach during the day. This is when we put a little plug in her trach so that she is forced to breathe out of her mouth. We're not sure how she'll do with this, but our ENT seems to think she'll progress very quickly.
3. Once she is capped successfully during the day, she will go in for a sleep study capped to see if she is having any obstructive sleep apnea (where she stops breathing because her tongue is too big for her small airway).
4. If the sleep study is clear, we may be able to avoid the distraction. If it shows apnea, we will go ahead with the distraction to give her airway more room.
The distraction isn't a surgery we take lightly. It is a major surgery that involves breaking the jaw in two places and implanting metal rods. There are external screws that we will have to turn for a month to lengthen the jaw, and it is described as very painful. :( This is a relatively new surgery, so doctors are unsure of long-term affects to the jaw and teeth.
So why are we even considering it??? Not doing the distraction would mean waiting for Abby's airway to grow enough to maintain proper breathing while she is sleeping. This could take a really long time and would mean having a trach for an indefinite amount of time. Having an opening that leads directly to her airway drastically increases Abby's chances for infection, so we want to get the trach out as soon as we can.
That's where we are right now. Next step: VENT WEANING!!! We are going to pulmonology next week and are going to push to move forward with it. Our ENT is also going to have a "she's ready" conversation with our fabulous pulmonologist...who is sometimes a little overly cautious!
Please pray that our pulmonologist gives us the ok to wean off of the vent, and that Abby can get into MWPH quickly. (Since it's a "voluntary admission," it's sometimes hard to get in.) Also pray for wisdom for us as we begin to seriously research the distraction and make a decision about what to do with her airway.
Friday, June 1, 2012
Thursday, May 31, 2012
Tara Peddicord Photography
We got the disc in the mail from our photo session! If you missed my first post about it, Tara is a friend of ours from waaaaaaay back. She was actually a camper when we were counselors at the camp where we worked, which makes me feel very old.
Now she's all grown up, and a fantastic photographer! Check out a few of my favorites, and be on the lookout for a few more posts over the next couple of days. :)
If you're local-ish and interested in having Tara photograph your family (or wedding!), click on the link above to visit her website. She's really nice and fun--promise!
Now she's all grown up, and a fantastic photographer! Check out a few of my favorites, and be on the lookout for a few more posts over the next couple of days. :)
If you're local-ish and interested in having Tara photograph your family (or wedding!), click on the link above to visit her website. She's really nice and fun--promise!
Family Photo
Abby loves kisses from her momma!
Caleb and Daddy
I hope this makes you smile :)
Wednesday, May 30, 2012
Surgery Tomorrow
Very quick update, because I'm behind on my work for school and need to catch up a little! Abby will be having surgery tomorrow @ 1:30 to check out her airway, get rid of any scar or granulation tissue, and try to figure out what's wrong with her ears. It will be between 90 minutes and two hours. We'd appreciate you remembering Abs tomorrow!
In other, but related, news...Abby got sick tonight immediately after her 4:00 feed. She seemed otherwise fine before and after, so I'm hoping that she just ate too much. I didn't give her any solids for dinner, but she's tolerating her overnight feeds fine so far. I'm hoping it was just a one-time thing....and that it doesn't affect her surgery tomorrow! I tried to call, but the ENT office was closed. I'll call tomorrow morning to ask, just in case. I really don't want to go all the way up there just for them to say they can't do it. Pray for that too, please!!
In other, but related, news...Abby got sick tonight immediately after her 4:00 feed. She seemed otherwise fine before and after, so I'm hoping that she just ate too much. I didn't give her any solids for dinner, but she's tolerating her overnight feeds fine so far. I'm hoping it was just a one-time thing....and that it doesn't affect her surgery tomorrow! I tried to call, but the ENT office was closed. I'll call tomorrow morning to ask, just in case. I really don't want to go all the way up there just for them to say they can't do it. Pray for that too, please!!
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