Jul 30, 2008

Me Say Go THERE!

It's been about 3 days. We've been working on pointing with Ainsley. I know moms say it's not nice to point but in this case we've been encouraging it so she can get communicate with us. We started noticing she'd hold out her hand when she wants something. So we started picking her up and carrying her the direction that her arm is pointing. Once we get there she started to point to someplace new and after a few days she's started navigating around the house this way. I feel like she's the princess and I'm her servant carrying her around on one of those seats that you hold up on your shoulders with poles. Sheesh. All I know is that it's obvious that this could go very bad very quick and we may just be creating a monster. Just tonight Evie was watching Thomasina and I was folding laundry. Ainsley would cry and hold out her arm. I'd pick her up and carry her the direction of her arm, the couch. I'd sit down and a few minutes later she'd cry again. I pick her up and walk the direction of her outstretched arm, back to the blanket on the floor where she'd been playing. Then she navigated me back to the couch, then the blanket, then the basket full of movie figurines, then to the game bookshelf, back to the couch, to the blanket, and the game shelf again. Ah ha it dawns on me she wants to see what's in the game boxes. Holy cow I'd better watch out! There's nothing like a 2 year old and 50 games full of tiny pieces to strike fear in a mother's heart. This is the first time I've been a little glad she's developmentally delayed. "Oh, no, " I say. "Those are not for you." Now that she's noticed them we might have a problem.

Still it's great to see that she GETS IT! She hasn't figured out how to use her finger to point yet but hopefully that will come. Then my hope is that after she's had a taste of mobility (even if it's me that's doing the moving.) that she'll be more motivated to get moving if I back of from taking her everywhere she wants to go. Besides, really, how long could I keep that up?

Jul 29, 2008

Vomitting Update

Ainsley had virtually stopped vomiting in February when I put her on a homemade pureed food diet. However, she still had a very sensitive gag reflex and we knew that if we fed her more than she could handle she was still likely to vomit. Especially because the vomiting seemed to be cough induced and she coughs a lot because of trach secretions. So even after it stopped we were still living with the fear that at any moment she would. And occasionally she would, every so often, but not 1-3 times a day, like she did for that first 16 months.

After going several months without it being so much of an issue it was horrible to find that it started again the first week of July just as quickly as it had stopped. That week we discovered she had some granulation tissue at the trach stoma under the trach that was causing her a lot of pain. We took her into the ER before the 4th of July weekend to have it removed. But even after she'd healed the vomiting continued. Now that I was not used to her vomiting I could see it was unacceptable. Truly I'm not sure how we lived with it for so long. It's like your child has a the flu but it never goes away. You never know when or where you will be when they vomit so it is constantly on your mind. And unlike for other kids there is a high probability that the vomiting is what is causing Ainsley's airway problem, the swelling. And since most of the vomiting was caused by coughing up secretions we had to jump to suction her the second she needed it which was about 50 times a day, sometimes every few minutes. If we didn't she'd have vomited much more often. Things were further complicated by the fact that she is tube fed and underweight. We could never really get all the fluids in that the dietitian recommended in part due to the reduced stomach capacity and sensitivity from the g-tube. So she was already getting less than she should so every time she'd throw up a feeding it just made the problem that much worse. Now I could see that we were going to have to do something so I started researching and reconsidering a Nissen Fundoplication surgery. Just when I was ready to schedule it, and was waiting on a referral from Cincinnati Children's, it stopped about as suddenly as it started.

I still believe there may be reason to consider the surgery but it's not as urgent.

We've even been able to give her some canned formula and it hasn't come back up. It would be nice not to have to make the puree every day but it does affect the digestion. This morning she was sitting on the bed while Evie and I read and as we finished we noticed she was sitting in a big pile of poo. It's so runny from the formula that it squeezed right out of the diaper all over the quilt. Yuck!

Jul 21, 2008

PECS Book Exchange

Yes I like to come up with crazy titles to capture your attention.

Since completing our PECS binder I've been showing Ainsley cards when I have time and think of it. Keep in mind that there is a lot going on at our house. The usual things plus right now my seven year old is obsessed with Harry Potter. She can't go 5 minutes without asking a Harry Potter question, showing me a picture she's drawn from Harry Potter, or is insisting on wearing a pleated skirt knee socks and a turtleneck in July or some other non-sense such as decorating the entire house to be Hogwarts (that was today). My son just had his 5th birthday this week complete with Pirate party on Saturday, my crazy neighbor went postal about trimming the tree by the sidewalk, I had issues to resolve with one of Ainsley's therapists last week, Ainsley has been vomiting again for several weeks so I've been considering the pros and cons of surgery plus doing lots of stinky laundry and I'm working with the state and an agency to get Ainsley a nurse. So I've been busy as usual but I try my best to keep up with the therapies.

She gets really excited every time I bring out the PECS binder which I hope is a really good sign. Today she was having a blast looking at the cards and turning the pages for a few minutes together. According to PECS protocol the first step is to teach the child that handing over the picture means they'll get whatever is in the picture. Today I handed Ainsley the PECS card with the picture of books as I'm holding a book in my hand. Immediately she handed over the card with a big smile on her face. I handed her the book in exchange. This is the exchange part of the Picture Exchange Communication System (PECS). She kicked her little legs with excitement and had the biggest grin on her face. What a cutie. I hope this means she's really understanding how it works and that she'll keep handing over those cards. Mostly she likes to hold onto the cards. Previously I wrote how she'd identified people in the PECS pictures. Well after doing that a few times she has since gotten pretty pissed off when I ask her to repeat that performance like a dog and pony show. And if I offer 2 PECS cards and ask her to pick one she's gotten pretty smart and will put out both arms and take them both at the same time so she gets to keep both instead of just the one she would otherwise have picked. At least with the exchange activity she gets something in return. Once she's mastered this step we can move on to the next. It would be so great if she could let us know what she wants.

Jul 14, 2008

Eh. Exactly What I Expected.

So I didn't even bother to tell anyone. Ainsley had a scope (soft scope in the office, no anesthesia) scheduled today. My strategy for the past year has been don't expect much. It's easier to be pleasantly surprised than disappointed. It worked. I wasn't disappointed at all. Today's scope went exactly as as I suspected, the swelling looks the same. The only surprise was coming home to find my sister had helped the kids make popsicles out of lemonade and Tootsie Pops. Pretty cute. The Tootsie Pop colors the tip of the popsicle. I thought this was a craft my sister had come up with in place of a craft kit. No. It was all Evie's idea. I've gotten so cynical I'm not even going to go into all the details of how long we waited to be seen, how the respiratory therapist had to figure out how to check pressures on a PMV, how we discussed at length proper protocol for administering inhaled meds, debate over the necessity of the warm mist collar, debating over reflux meds, etc etc. Nah, not this time. Just no surprises, everything went exactly as expected.

Jul 7, 2008

Trip To The ER

Thursday we made a fun little trip to the ER. Thankfully it wasn't truly an emergency but, none the less, it was still about as much fun as the emergency room ever is.

My sister, Sheryl (what would I do without Sheryl), had come over to help me take Ainsley to a doctor appointment with a naturopath. What can I say, I'm getting desperate. As I was getting her ready I noticed that she had some granulation tissue around the cannula at the stoma site. Oddly this tissue had developed rapidly over the past 3-4 days, where prior there was nothing. I had been noticing she needed more cleaning than usual and when I would do the routine trach care she would really cry. Poor babe. So we'd been doing more cleaning than usual and hoping it would just go away but when I was getting her ready to go Thursday she got so upset when I touched it that she broke out in a sweat all over her entire face. And I noticed two tiny white specs on one of the bumps. Not good.

Knowing that it was getting worse instead of better put me in a tough spot with the holiday weekend. I thought it best that it been seen in case it was turning into an infection. Clearly it was painful and Ainsley hadn't been acting right. So I paged the otolaryngologist on call. He was concerned and said they couldn't see her in clinic (it was about 2:20) and that I wanted to come to the ER ASAP before the attending otolaryngologists left for the weekend.

I decide to cancel the naturopath appointment (and unfortunately this doctor is now out of town for 6 weeks. Bummer.) and leave my sister with the kids at home and risk the drive by myself rather than have them stuck with me at the ER. When I get to the ER I explain the situation that the on-call doctor had me rush in because he wanted the attending to see her. So I'm still waiting nearly 1 1/2 hours later just to see the regular ER doctor who I have to see before the otolaryngologist. It's procedure. I have to make kind of a fuss because I'm afraid those doctors are getting ready to leave for their holiday. Squeaky wheel and all, a few minutes later the ER doc shows and says, she won't be able to help me I need the otolaryngologist. Duh. At this point it's getting near 5:00 but just in the nick of time the nurse reached the on-call otolaryngologist and he comes a few minutes later. He had notified his attending who'd be on his way shortly. In the end it was the head of otolaryngology who came. He burned off the growth with silver nitrate. In addition to him we had the on-call otolaryngologist, and two otolaryngoloists in training, so that's 5, count them, 5 otolaryngologists in our room. I sure hope that nurse walked by so she could see that I was not being an over dramatic mom. We even chit-chatted about Dr. Cotton and they took a card from our Tracoe trach because they liked them and want to look into them. So luckily it all worked out okay in the end.

We got a prescription for an ointment that we've been using. It seems to have done the trick along with the silver nitrate and she is back to normal. The growth is gone and she isn't so sensitive to it being touched.

The one thing the attending otolaryngologist said, that I wasn't too thrilled about, is that he thinks she may be headed for a stoma revision surgery because of how bumpy her stoma is with scar tissue. I hope they don't want to do that because I have a feeling that the way Ainsley scars it would just come back. I'm still hoping she'll get decannulated one day in the not too distant future and that the stoma revision can wait until then so that she has the best looking neck possible. I would guess you can only cut away so much skin, so many times, before things start to look pulled. We have a scope scheduled for the 14th so they'll be able to follow up on the granulation tissue then.

On a positive note, what made it all worthwhile, as I was walking to the pharmacy to get her prescription I ran into Dr. Song, her orthopedic surgeon. I was able to talk to him for a minute about the problem of her hip tightness and how it's affecting her legs, making one seem longer than the other. And one thing led to another, he checks her out while we're standing there in the hallway, and he tells me we can lose the leg brace! We are thrilled because we'd been told in May that we'd be keeping it until September. He wants us to come back in 6 weeks for another x-ray to see how she's doing. She is sleeping so much more comfortably. It's SO GREAT! Remember she's slept with her legs apart, on her tummy, in a fixed position, for over 7 1/2 months! Imagine that the next time you're tossing and turning in bed and perhaps you'll feel instantly more comfortable.