Dec 30, 2008

A Merry White Christmas Was Had By All

Well this year we had the whitest Christmas in history. The snow started on the night of the 13th. The kids made this snowman at 10:00 pm thinking this was "THE" chance to play in the snow for the year.


Little did we know that there would be more.....Lots more, in the weeks to follow. We had to laugh when school was cancelled the Wednesday before break because it was supposed to snow. But it did come soon enough and then school was closed for the rest of the week making for the longest winter break ever. We were pretty well snowed in most of the time but largely by choice.


My favorite snow picture. You can see Ainsley wasn't quite sure what to think. I think if she could talk she'd have said "What IS this stuff?"


Sledding down the driveway. That doesn't happen very often.

Nor does having enough snow to build an igloo. We found out Ainsley does NOT like Igloos. Although Daddy did something that made her stop crying for a second for this picture. Daddy says this may be the only igloo he ever builds.

Finally when it was obvious the snow wasn't going to melt we managed to get the kids downtown to Macy's to see Santa. We were the last people to get their picture taken for the night and as a result the kids all got these huge frosted Santa head cookies as our prize. Sometimes it pays to be late.


Please ignore the fact that my eyes are 90% closed. This year's photo was not the best but at least we did it. This was the 8th year. A little snow can't stop us.

Over the break Ainsley started pushing this little wooden car around the house. I love the sound of the wheels squeaking.
Ainsley is starting to get the concept of dolls. It's cool to see her start to put it together.

Ainsley standing with support from the couch and Daddy to catch just in case. Her legs are getting strong and her balance is improving. Wow are we proud!


Our neighbor gave us a gingerbread house kit. All we had to do was make the royal icing and decorate it. We all agreed it was the best one ever although it took some extra time and I must confess we actually didn't finish until after Christmas. We used candy necklaces for "Christmas Lights" and the door's white heart appropriately says "Wonder". This house even has a mouse and a patio made of candy Legos in the back. It's such a shame to eat it.

Opening her stocking. She got a spinning light up ball that she found quite mesmerizing. She loves it.
The kids opening gifts Christmas morning.
A tough dress to crawl in but she managed and she sure looked pretty.


Ainsley got her very own boxes of colored tissue from Auntie Sheryl (mommy's idea from seeing her play with it with Great Grandma Ruth). You can see it was a big hit.
Ainsley and Evie in their matching dresses at Grandpa David's.
Despite the excess of snow (by NW standards) we were able to get to families' houses as planned by driving our second car which has four wheel drive. This was the first time we drove it as a family with all three of the kids crammed in the back seat. It's really just for emergencies. I guess this counted. Christmas still happened, thanks to the ole' Grand Cheroke. Only Christmas Eve at our house was a problem. My mom and brother (who has muscular dystrophy) were unwilling to risk a fall in the snow and stayed home, which was smart but sad. It was a week of feasting. Good company. Good food. The kids, lucky as they are, got lots of wonderful gifts and had a lot of time to play together. It really was a great Christmas.

Dec 21, 2008

Two Months Post Nissen

It's the busiest time of year.....Christmas. I don't know if anyone will read this. Perhaps some of you are at home stuck in the snow. Steve took the kids outside to meet up with some neighbor kids and sled the hill. So it's just me and Ainsley inside. Although she reached for the door when she saw them leave so I think she'd rather be out with them but I think there is just a bit too much snow for her today. I might lose her.

I noticed the date and realized that we are two months post Nissen Fundoplication today and wanted to quickly say that she is STILL VOMIT FREE! And she is pretty much back to regular feedings. We've been able to give her a 8oz boluses of her pureed foods and had no adverse reaction. So I now feel pretty sure of announcing to the world that it was successful and she doesn't have any of the bad side effects that can go with this stomach surgery. (Although we can't judge any effect on her ability to swallow since she refuses to eat.) Yea! She's still up in weight by over three pounds and looks really healthy. I only wish we'd had it done when she got her G-tube at 9 months of age. Oh well, hind sight is 20/20.

The one unfortunate thing is that her beautiful incision that was so straight and fine widened and became raised after about a month. The doctor thought perhaps the scar has gone keloid and I'm keeping an eye on it and just hoping it stops. There isn't anything that can be done. It doesn't look too bad.

We haven't seen too much additional change in her airway since that first month. We're anxious to see Ainsely's new otolaryngologist on January 23rd. It will have been 3 months since the surgery and I would think that would be enough time to see the results of the absence of stomach acid exposure to her airway. It will be interesting to know if it was the stomach acid that caused the upper airway swelling. Perhaps not but at least now we'll know and be able to rule out one more thing.

Dec 16, 2008

Ruptured Eardrum Of Course

Last night Ainsley was acting fussy when we laid her down to sleep. Her alarms kept going off throughout the night and she would stir and wake us up. I thought maybe it was her stomach because we gave her a bolus of puree and then Steve accidentally hooked up the drip too. But even a few hours after stopping her feeds she was still acting the same. Finally she settled into a deep sleep in the 6 am range. She had been acting normal until bedtime so I shrugged all the bedtime weirdness off. But today I got my answer. After the kids got picked up at 11:00 (late start for snow day) I sat on the couch with her ready to start my relaxing day at home in my pajamas, since she didn't have preschool, when I saw that she had some weird stuff virtually filling up her ear. It looked kind of crystallized and yellowish-whitish like a mix of dried earwax and puss. Nice huh? Three kids and I've never seen anything like it. Turns out that was exactly what it was. Thank goodness our pediatrician squeezed her in to be seen. They were booked but she's so good to us they worked us in when I told them I thought it had ruptured. So after rushing from the appointment to pick up the other kids from school we headed to the U-Village to buy some gloves while Ainsley's prescription was filled.

The Gap was having a fabulous $5 hats, scarfs and mittens sale and I was feeling lucky. Until we noticed Adrian lost WowWow. This is the Webkinz Chihuahua that I bought for him off E-bay with his allowance money because he lost his first WowWow a week after he got him as a present for getting stitches on his forehead from falling and hitting his head on his cubby in his Kindergarten classroom. WowWow #2 literally showed up in a box yesterday. We scoured all the placed we'd been. No WowWow. What does Adrian say? "Maybe Santa will bring me a new WowWow!" This Webkinz is sold out all over the place. I say "NO. No he won't!" Adrian says "How do you know?" Uhmmm. Because Santa doesn't bring replacement toys that are impossible to find when he only has a weeks notice. Looks like I know what I'll be doing this week. Sigh. Or maybe it's time to learn the hard knocks that even Santa can disappoint.

Anyway we got the antibiotics and ear drops and started them tonight. Poor babe. She's not happy and it makes me wince thinking about it. But I'm sure she'll start feeling better soon. She developed a bit of a fever after the rupture. The doctor said that's usually the opposite of how it happens. Leave it to Ainsley to be different. Fortunately it should heal on it's own.

Best of all? She has a hearing test tomorrow morning. Ha, ha ha ha. Doesn't it figure?! And it's too late to cancel. I'm hoping it'll be cancelled due to snow since it's supposed to snow tonight.

Dec 4, 2008

Ainsley's IFSP

Ainsley has an IFSP meeting to set goals for her therapy through the birth to three center every 6 months. She started in home therapy with them when she was less than 5 months old. It was hard to know then what to focus on. The goals seemed so lofty, completely unattainable, and she could do so little. Even as recently as 6 months ago we set goals on her IFSP that I really thought were ridiculous, I almost blushed when I said them. But it was what I hoped for, for her, so onto the IFSP they went. I had no idea that she would actually meet the majority of those goals, and do it in record time. Some big ones like crawling were met less than three months later. She pulls up to a kneel. Moves in and out of sitting positions. Can recognize some common objects. Will use gestures to convey what she wants (reaches toward things she wants or where she wants to go).

Today's meeting was so positive. Her case manager, her new teacher and her current three therapists all said how impressed they are with her progress. The therapist who works on fine motor skills says that her fine motor skills have advanced from 6 months of age to 13 months of age since September. In fact earlier this week Ainsley was able to use a pincer grasp to pick up a raisin and place it into a small bottle with a 1/2" opening. It's so cool to see her be able to do new things. Not that I really care about placing raisins in bottles but this shows that her limitations are decreasing day by day. Everyone is thrilled with her progress. So much so that we set high goals again for the coming period.

Her PT surprised us by saying that she thinks she's ready to try to learn to climb stairs, cruise furniture, and even take steps between objects like a table and sofa. They will make opportunities for her to work on these things during therapy. I say why not aim high!

We will be working on increased fine motor skills using hand movements in finger plays in an effort to improve her ability to sign.

Her speech therapist will be working on increasing Ainsley's receptive language skills, will continue with PECS, teach her to communicate yes and no with head shaking, among other things.

We plan to place our OT emphasis to getting her to enjoy tasting things without substance such as candy or flavor sprays. I must laugh at that one. This was my idea. I think it's hilarious that I have to do therapy with my child to get her to lick a lollipop. But in all seriousness she hates it. That is not good. Come on! What kid hates candy?! On the other hand she has no typical food aversion. She demands to sit and have dinner with us every night. She wants a plate, cup and spoon and even demands to have table-food on her plate. She plays with it and makes a mess. Occasionally she accidentally gets a taste. I even had to pick two grains of rice out of her mouth the other night. But she didn't gag like she has so many times when a bit of table-food accidentally makes it's way into her mouth. Earlier this week, hoping this was a sign she may be able to eat, I tried yogurt, rice cereal, strained chicken and vegetable, apple sauce, pudding, whip cream, and yes... candy. She would swallow a bite or two but clearly was not enjoying it as she has at times in the past. I can't help but think that with her airway opening up she is protecting herself by not eating. But it's perplexing as she will happily drink water from a cup some days. After reading a great book earlier this year "Secrets of Feeding a Healthy Family" by Ellyn Satter I decided not to push feeding. I'm re-reading the book again and again I feel that what's most important is developing a healthy relationship with eating. Even if that means it takes her much longer to learn to eat. I have always believed that she will eat some day. I don't know when, but if she's anything like our other two kids it'll probably go a lot better when I stop caring and she is in complete control.

When you consider all that Ainsley has had going against her: an improperly and under-formed cerebellum (the area of the brain which controls movement and processing of the senses), she was hospitalized for two months, was strapped into a reflux wedge for many months, had to recover and heal from two major cranial reconstructions in which her entire skull was cut to pieces and replaced, she has an artificial airway and therefore no ability to communicate verbally, had a feeding tube in her nose for 9 months and then a feeding tube surgically placed, has an impairment to her vision, had dislocated hips at birth and was then immobilized for 9 months as they were set back in place, and severe vomiting/reflux until 24 months of age. My God! Isn't it amazing how far she's come?! I am so proud of her!

Dec 2, 2008

Eye Appointment - Ptosis Follow Up

I don't know what to feel. Some days I think I've felt so much in my life I've used up my ability to feel. We had an eye appointment today with the opthalmologist. The last eye appointment Ainsley had on December 31,2007 I left bawling when I was told that the eye surgery that would correct her droopy eyelids (ptosis) would not take place at age 2-3 as I'd been told but at age 4-5. And that her eyes would, in fact, never look perfectly normal as I'd been told, but that a more realistic expectation would be that she be returned to the visual appearance that she had prior to her second cranial reconstruction surgery in July 2007. That was a bad bad day. Not a Happy New Year's Eve for sure. Today's appointment went better. But then how could it not?! I left in a good mood but with this weird underlying sadness. I felt like maybe I should cry but I didn't. It's like when someone dies and you know it would be polite to cry to show you care, but you don't. And worry about what it means that you didn't cry. Now don't worry. No one died. And nothing all that bad happened.

Things are good, really. The important things. Ainsley seems to be able to see. As well as you can test a two year old that won't let you cover her eyes and isn't verbal and doesn't understand the instruction "Look at the striped square". She was supposed to look at the square of stripes as they moved it's location to show that she could see it. She did for all but the smallest lines. I wasn't too worried about that. They were hard to distinguish from the background of the gray card.

They dilated her eyes. The ophthalmologist says "WOW her cups are big." but I'm not alarmed because I've heard them comment on "that large cup to disc ratio thing" so many times. He consults the records and sees they haven't changed in size. Good. No change is good. Two years later I still don't understand what it means but since he's not worried I'm not worried. The depth behind them is apparently shallow which is good because if not it can mean glaucoma. But he checked her eye pressures just to be sure. Fine. Normal pressure. Yea! I sure don't want her to go blind. (Eyeroll)

But the droopy eyelids (Ptosis), that get noticed everywhere we go, that is going to be another matter. The surgery that would help correct this cannot be safely done until she is about 4-5. But Dr. Weiss is concerned that she doesn't have enough brow to anchor to. So that may mean waiting even longer until she has had brow prosthetics (or potentially even a brow reconstruction) which her cranio-facial surgeon was projecting to happen at age 8. To say that I am displeased at the thought of waiting another 6 years or more to see her eyes would be an understatement. But I am left with just a vague sense of disappointment in a long string of disappointments. I'm hardly surprised which makes it easier to take. Fortunately I have a cranio-facial appointment scheduled for January 12th so I don't have to wait too long to discuss it with the surgeon.

I'm trying to look to the positive which is that she can see and is otherwise doing so well. A fact that the doctor commented on about 10 times. Apparently he says she is doing "a million times better than he ever thought she would". I appreciated his candor. Most people don't really tell you what they think. Especially doctors. I'm not sure whether I feel reassured by this. It's good that he thinks she's doing so well but the fact that his expectations for her life were so low is a little alarming. But I suppose it's hardly surprising. He kept asking what I thought, "She looks really good don't you think, mom?" "She's doing great isn't she, mom?" Probably he just didn't want me to cry like last time. Poor guy. But in answer to his question....well....

The day Ainsley was born and the days following everyone was acting weird. The doctors, nurses and everyone else kind of tip-toed around us because she looked different and was intubated. We kept asking each other "It's not that bad is it?" We always saw her beauty. And we expected her life to have value. I didn't want to tell the doctor that in truth I really liked how she looked before her surgeries more than I do now. A fact that a stranger or doctor probably can't understand. I really wanted to say, "No! No she doesn't look great. I still can't see her eyes! Can't you fix her eyes?!" If I had known the second cranial reconstruction would compromise her ability to raise her eyelids I don't know if I could have gone through with it. To me, getting a "normal" head shape wasn't worth it. But, alas, it had to be done to allow her brain the proper space to grow. And what's done can't be undone. Now comes the challenge of acceptance. And patience, as I wait for the day that the surgery can be done and I can see her beautiful eyes again. And hope. Hope that it really can be done.

Nov 28, 2008

Thanksgiving.

All my children are amazing. Each in their very own special way. Evie, she is an artist and a busy body. Always thinking, planning, doing something. Often involving excessive consumption of art supplies. But this Thanksgiving I was so incredibly proud of the way she put her talents to use. Her teacher had all the kids make a "Thankful Bowl" out of a tissue paper mache technique. It turned out quite beautiful in shades of red and orange. We took it with us to Thanksgiving dinner at my birth mom's house. We cut strips of colored paper and Evie went around and asked each person to write what they were thankful for and place it in the bowl. No small task since there were about 20 people there. Then she read them to the group before dinner as an alternative to saying grace which we never do in our non-religious group. She did a great job being brave and standing up to read them in front of a large crowd. I helped when she didn't recognize a word or couldn't read the handwriting. Everyone seemed to enjoy it and even get a good laugh out of it when one was read poking fun between cousins or when Adrian's was read saying he was thankful for his Pokemon book. It was a great idea and I think I might make that a family tradition.

There were many things I was thankful for this year but was only able to write 3 before Evie cut me off, saying that was enough, which I thought was funny. Apparently there is a limit on thankfulness. In particular I said I was thankful for three beautiful healthy children. I'm sure as my scroll was read there were some in the group who would question the honesty of that. But it is true. As far as children with major medical issues go Ainsley is pretty healthy. I am thankful that her airway condition hasn't worsened, caused her to need a ventilator and that she has not had frequent respiratory infections. In fact things have gotten much better for Ainsley over the past year.

Last Thanksgiving she'd just had double hip surgery and been placed into a spica cast which she wore for 3 months. She then wore a restrictive brace for 5 more months. Thankfully she is an easy going girl who handled the restriction with little frustration. Looking back I can hardly believe we made it through that time. She needed so much suctioning of the trach and had the vomiting issue on top of it. Positioning her was such a challenge. The special diapering and concerns about soiling the cast.....THAT is an amazing change, to be done with hip issues, what a blessing. Sure, we're still working on physical therapy but for the most part, we're done.

As a result of correcting her hips she was eventually able to learn to crawl in September! What an incredible change that has been! It is so truly beautiful and inspiring to see her work so hard to follow her brother and sister around the house. We are still in awe that she met this goal! When we placed in on her IFSP in June we really thought it might never happen. Little did we know she would amaze us by starting to crawl just 3 months later!

The trach and it's care, the cranial surgeries, the feeding issues, the eye issues, the concern about her brain development, the hip issues, the therapy it's all been hard, but the vomiting has been one of the hardest things to deal with. Every time it happened we knew it was hurting her airway (and that she'd never get the trach out so long as she kept vomiting), we were concerned she would aspirate the vomit and get pneumonia or lung damage, we had messes and laundry up the kazoo, and the frustration of knowing that she was losing calories and not maintaining an ideal weight plus the guilt when doctors and therapists would look to us as if we were doing something wrong. We made the decision to do a Nissen Fundoplication in October and have been very happy with the results (see prior posts) so far and are thrilled to see Ainsley have more energy and gain weight. She still has issues with coughing up secretions and it causing gagging and retching but at least the stomach contents are staying put in the stomach where they belong. We are having more challenges with oral feeding but I am hopeful that will come in time.

Many people give thanks at Thanksgiving for their health. Often people in hard times say "Well at least I still have my health, right?" as a sort of consolation. Few people truly understand what a gift our health really is. Having Ainsley, I KNOW that we are lucky that she is as healthy as she is and I KNOW I am blessed that my other two children have perfect health. Appreciate your own health and be truly thankful.

Nov 21, 2008

One Month Post Nissen- All Is Going Well!

Today it has officially been one month since Ainsley's Nissen Fundoplication and she is still vomit free! We followed up with the surgeon Wednesday and have been given the okay to transition back to regular feedings over a 2-4 week period. Feeding her 50ml of formula every single hour 24 hours a day has gotten old! Still, we want to take it slow so we don't over stress her stomach and cause retching that might risk breaking the wrap. We'll gradually add purees again (hopefully that will eliminate the stinky poo problem) and spread the daytime feedings over longer periods, increasing the size of the feeding and gradually reducing the night time drip of formula until we no longer have to use the feeding pump at night.

We will not know how successful the surgery was until she is on her normal feeding regimen. I feel pretty good about things though and hope that she will still not vomit or reflux even when she is getting her normal 8oz size feedings 4 times a day. And that it won't cause retching when we do. We have seen some retching and it's hard to watch. We don't want her to do too much of that for fear it could loosen the wrap. But the times that she does retch I believe are appropriate and she would have vomited without the fundo.

Amazingly Ainsley has gained almost 3 pounds since the surgery!!! She now has a nice little amount of chub on her tummy and legs. There is now no doubt the degree to which this vomiting issue or reflux was causing problems for her, especially in regard to her weight. She has been considered underweight even though she was on a whopping 1200-1300 calories a day. She's gained so well on 1200 a day since her surgery that the dietician has approved for us to reduce her calories to 1000 per day. She seems to have more energy and is getting stronger, even starting to pull herself up in the kneeling position. I suppose because she's retaining more of her nutrition and she just feels better.

And best yet. We had an appointment with her otolaryngologist(airway doc)on the 10th. Less than 3 weeks post surgery the scope showed a decrease in her airway swelling. We had noticed almost within a week of the surgery that she started making more sound and was better able to tolerate her PMV (speaking valve). She wants Ainsley to be able to wear her PMV all the time consistantly for 3-6 months even when sick,except while sleeping. I'm not sure if she will be able to with the trach cannula taking up some of her airway, and the granuloma that she has, as well. Sadly we discovered that her otolaryngologist is moving to the East coast at the end of November. So it was fortunate we got to see her one last time and say goodbye. Dr. Chen saw Ainsley's airway a few days after her birth when there wasn't any significant swelling, she performed Ainsley's tracheotomy, performed several laryngoscopies/bronchoscopies as well as scoped her multiple times in the office. As one of her tough airway patients she would like to know what caused Ainsley's airway swelling and suspected reflux played a role. We hope she will keep in contact through Ainsley's blog. We have a good replacement doctor taking over. The plan is to see him in late January. Here's a video from the scope.



On the down-side the reduction in swelling opens up the airway for aspiration and potentially lung damage from that. So we'll be watching her carefully and hoping for no increase in respiratory infections. I thought she'd perhaps start eating but she seems even less interested than in the past. Maybe with time once she's better able to protect her airway.

Unfortunately Ainsley caught a cold and developed some nasty granulation tissue on her trach stoma last week and that was causing her some serious difficulty for awhile.

We used Tobridex drops and switched to a Neo length trach temporarily and that seemed to help. She's finally smiling again and getting back to her normal activity level. It would be nice to be able to take her to therapy/school. Especially since she's doing so well with her PMV, even the unmodified one. I'm hoping we'll be able to get back to using it as much of the day as possible. It's been really great that she's been able to tolerate it so much better. We've even been able to hear her laugh a little which was beautiful! I tried to shoot a little video. It's not great, but gives you an idea of how she's doing with her PMV. Still not very loud or clear but better. Small steps.



Oct 31, 2008

Happy Halloween!




Click Here For the Entire Halloween Week Slideshow at Shutterfly: http://cmd.shutterfly.com/commands/pictures/slideshow?site=ainsleyspics&page=ainsleyspics&album=283

I hope everyone had a Happy Halloween! It was a hectic week with Steve having a major work deadline (and working until 2am many nights) the week before the holiday. But somehow we managed to pull it all off. We made it to the school Barns & Noble bookfair. Surprised Daddy with a new Hermoine hair-do. Had costume day at ballet class and preschool. We squeezed in some fun carving pumpkins at a friend's party. On Halloween we made chicken alphabet soup in a pumpkin and cemetery "dirt" cake (since I'd promised the kids we would but didn't have time to do it earlier in the week as planned). We all Trick-or-Treated around the neighborhood for about an hour. WE DID IT! Phew! Thank God my sister Sheryl was here Halloween night to help us pull it off and hand out candy while we were gone. It looks much more fun and relaxed in pictures than it was in real life.

This year the whole family dressed in Harry Potter costumes: Evie was Hermoine, Adrian HP himself, Steve was Professor Dumbledore (he forgot to wear his glasses, oops), I was Professor McGonagall and Ainsley was Harry Potter's owl Hedwig. She cried because she hated the hood but stopped after about 5 minutes. At least she was toasty warm outside in the cold. Steve and I would normally NOT dress up for Halloween. But, Evie has been obsessed with Harry Potter all summer (complete with life size paper HP decorations all over the house e.g. see Jenny on the bathroom floor picture) and has been talking about dressing as Hermione since then. So somehow she badgered us and pleaded enough to convince us to do it. In the end I'm glad she did even though it was a lot of trouble just for trick-or-treating (and of course the picture my reward).

This Halloween Ainsley was uncertain about the whole costume thing. We started trying them on earlier in the week. It took several days seeing me dressed up for her to start to get that it was still me under the granny wig and witch hat. She would look at me with the funniest expression like, "What is going on? Who is that? What did you do with my mommy? Should I laugh, cry or be scared?" I SO wish she could talk so I knew what she was thinking. She's a pretty go-with-the-flow kind of gal so luckily she got over the owl costume pretty easily and then seemed to enjoy the walk around the neighborhood in the dark trick-or-treating but the real fun for her began when we got home, took off the costume and she got to play with the kids' candy all laid out on the carpet. I guess that's the best part for all of us, really. Evie and Adrian ate enough chocolate to make them sick but Ainsley's treat of the night was her sweet little feet.

Oct 30, 2008

Ainsley Turns Two












We were excited this year to have a low-key birthday celebration for Ainsley on the 18th. Sure we'd considered having a party. We did the big party thing for her first birthday because that's what you do on a first birthday. It was a great party and a perfect way to end a really remarkable first year. But at age 2 it seemed to me that she would most enjoy being with her family doing something fun. I decided to throw caution to the wind and take her to the Seattle Science Center despite the chance she could pick up a bug and we'd have to reschedule her surgery that was only 3 days later. We used lots of hand sanitizer and thankfully all went well.

Ainsley's birthday started out with a special dance performance by Evie. And the presentation of some hand made cards. Our usual Saturday ritual of coffee in bed with the kids making a ruckus in the bedroom. Finally we headed out to the Science Center. We hadn't been there since Evie and Adrian were much smaller. This was the perfect age to take them. They were so curious about all the little mini experiments. Being someone who is curious and likes to learn I also had a great time. My favorite was the giant zipper. I've had more than one stuck zipper in my life and had always wondered what the heck the problem was. What's to go wrong with something as simple and low tech as a zipper, right? And yet it happens. Apparently all the teeth have to be exactly perfect to fit through the slide at exactly the right angle to mesh the teeth together. If one tooth gets slightly bent it throws everything off. I also marvel that such an everyday object that we take so for granted as a low-tech no-big deal thing was only invented in the last century. The precursor to the zipper in 1892 but the zipper as we know it was patented in 1906 and further refined even later that that. Even the automobile was invented in 1889. Interesting isn't it, that it took man longer to invent the zipper than the automobile? Well anyway......

We also enjoyed testing our grip strength, testing our pitch accuracy, testing the gravity of cantilever, testing our vision (I REALLY need my glasses.), seeing how much electricity a lightbulb or two uses, taking pictures of the dinosaur robots (unfortunately the low light "broke" my fussy expensive camera >:( ) , we saw the butterflies and finally the main attraction for Ainsley, the toddler water play area. Sadly despite a nap in the stroller she was pretty tired by then so it wasn't quite as fun for her as I'd hoped. Still it was a great day out with the kids. I tortured Ainsley by making her wear a jeweled crown to denote her as the birthday princess. As usual we stayed until it closed before we headed home.

Adrian played with Ainsley on the floor while Evie and I got her gifts together. She just loves Adrian to bits and he loves her. I wonder if they'll always be close. All three of them really. She's lucky to have such a great brother and sister who love her so much. I'm always amazed at the grace with which they've accepted her as one of them, no different in any way.

We decided that a dinner at home was best for one who doesn't really eat. We ordered a pizza. Like every night Ainsley sits at the table with us in her highchair. She's gotten pretty funny over the last month or so she demands food. We often give it to her but not always. Well now she actually gets mad if you don't give her some. She plays with it and sometimes brings it to her mouth. I gave her a pizza crust and she actually brought it to her lips and appeared to taste it (more of a lick than a bite). THEN she proved to us that she turned TWO and looked me in the eye and hung the crust over the highchair and smirked and dropped it. I pick it up and give it back to her and she does it again....and again. I know this is ordinary two year old behaviour, but it's the first time I've seen her deliberately throw food. Thankfully it was a pizza crust and not my chicken paprika or something equally messy. I was thrilled.

We opened some presents. She had to have a lot of help from her brother and sister but they were happy to oblige. She got an adorable little woodland cottage with magnetic critters. I thought she'd love it and she did. Phew. It's hard to buy for a child with limited play skills and two older siblings that already have a house full of toys.

We finished up with some lovely cupcakes from Macrina. Ainsley licked a little frosting off her finger before she pushed it away. Maybe next year she'll actually eat a bite of cake. I can dream.

Oct 26, 2008

She's Smiling and Vomit Free


Before the surgery. The scar is from her gastrostomy.


Clearly in a lot of post surgery pain despite the morphine.


The incision is 3" long and goes over the gastrostomy scar. They use dermabond instead of stitches to close it. I think it looks amazing for the first day!


Refusing to smile no matter what.


Even for her favorite visitors.

The great news is that we finally started seeing her beautiful smile yesterday. That is the best and such a relief! Since the surgery we've had about 8 incidents where she coughed up some secretions and it caused her to wretch. Most likely the majority would have ended in vomit in the past. And a couple where they were so forceful her face turned almost purple but still there was NO VOMIT. So I'm feeling pretty confident that the surgery was successful! She's taking small feedings once an hour so there will be the hurdle of transitioning her back to her regular feeding schedule. But so far we have not seen any of the terrible side effects that can accompany a Nissen.

Here's a link to info about a Nissen fundoplication and how they work: http://en.wikipedia.org/wiki/Nissen_fundoplication

Oct 23, 2008

We're Home!

Yea! We made it home about 6:30. Had a hodge-podge dinner of left-overs. And are back to life as normal. You would hardly know that Ainsley was in the hospital on morphine just this morning. Evie's doing homework, Adrian's kicking a ball around the house, I'm on the computer and Ainsley is in the living room on hands and knees playing with the toys she got for her birthday less than a week ago. She still will not smile no matter what we do which, as you know, is unusual for her. Poor thing must be in a lot of pain still but she's persevering. I'm sure it'll be better tomorrow.

Edited to add: I guess I missed some details. What I think happened was that she was having excess gas due to the anesthesia and surgery and it was causing the intense pain spikes yesterday. Yesterday evening instead of doing continuous feedings we did gravity boluses and setup a g-tube extension and open 60ml syringe to vent the g-tube. It immediately seemed to ease the pain and we were able to gradually reduce the morphine and transition her over to oxycodone by 2:30. Overnight we switched to a continuous drip. In the morning, rather than doing the continuous feedings that the surgery resident recommended, we continued with boluses and continuous venting and got her up to her goal of 50 ml per hour by 4:45. That was the magic ticket for coming home, off the morphine, IV and at full feeds of 50 ml per hour.

Oct 22, 2008

Post Surgery Update

Ainsley has still been in a lot of pain. I'm sure the incision is very painful so it's difficult to tell if it's that, or if it could be gas, now that her stomach can't relieve any built up pressure. I'm not sure where the day has gone, we haven't made any progress on the feedings and at 2:00 they had her at the whopping rate of 5 cc per hour. Good grief. It might evaporate by the time it gets through the line. They only want to up the amount by 5cc's every 4 hours. So for us to get to our goal of 50 cc's per hour will take a day and a half if it goes perfectly. The surgeon who said we might go home today is going back to his standard response of the average recovery takes 3-5 days. I'm still optimistic and hope she'll bounce back over the night and get discharged some time tomorrow.

Sadly, she's pretty unhappy. I bought her a little doll that giggles in hope that it would cheer her and she barely looked at it and didn't even crack a smile. She isn't interested in playing with anything even just to chew on it. We had some bad gagging episodes where she tried to vomit and wretched instead and her head turned a really deep shade of red. Followed by blood tinged secretions. I'm just hoping that she'll figure it out over time so that won't continue to happen. It really looked excruciating. The surgeon said there will be swelling of the stomach for a month. And that it will take a little time for her to adjust to swallowing and managing her secretions. I have to remember that. It'll take at least a month to see the outcome of the surgery. At least a month. At least a month.

Steve will bring the kids to the hospital to visit tonight. I can't wait to see them. Unfortunately we lost our roomie and have a new child arriving while I type this. Cross your fingers that we get an easy roommate and that Ainsley starts feeling better so we can get out of here.

Oct 21, 2008

Nissen Surgery Today

We checked in at registration at 6:30 am and were brought back to the surgery prep area. I run into Ainsley's neurosurgeon a nice man who reminds me a lot of Santa Claus. It seems I can't go to Children's anymore without running into people who know her but I'm always thrilled when people get to see how well she's doing. But there is only time for a quick hug and few words since he's in his surgery scrubs and we're off to surgery. They took vitals and went through all their checks and balances. They take extra precautions because of her trach and complex medical history. I met with the anesthesiologists, nurse and surgeon. We joke about the size of her chart (3 inches thick) , I think he says chart number 107, but actually it's only 1 of 7. We laugh that that would be a new record. But then, she's only 2, sixteen years from now who knows.... I'm told the operation will take upwards of three hours. They want to give her a sedative but I ask not to and at 7:30 they take her away to the OR with hardly a whimper, the sweet girl. I get breakfast at the cafeteria and kill some time in the Parent Resource Room while I wait there for Steve after he gets the older kids off to school. A doctor came to talk to us about participation in a Reflux research study. That took up about all the time and by 10:00 they page us to come wait for the surgeon.

At 10:20 he arrived to tell us the surgery went well. He wrapped her fundo (plication) tight so it should hold tight no matter how much coughing she does. We are feeling good. The weight of the decision is off our shoulders now that it's done. We head to the Giraffe wing to meet Ainsley in her room. We receive a visit from Ainsley's dietitian to review Ainsley's eating plan. We meet our roommate. A friendly woman whose son with Down Syndrome had heart surgery the prior week. With the common bond of having a third child with special needs we hit it off and have lots to talk about while our children recover. The well-respected occupational therapist here at Children's happens to visit her son and she's nice enough to come to our side of the room and talk at length about Ainsley's case in relation to eating. She gives me great insight into how to make sense of a very complex issue. I'm thrilled to get a chance to talk to her since she normally only sees the babies. Hospital time. It sure goes fast.

Ainsley is on morphine but was obviously uncomfortable and would arch in pain every 20 minutes or so as if she was getting a cramp, and her heart rate would shoot into the 180-190's. We keep paging the nurse for boluses of morphine. After every 3 boluses she ups the drip rate. Six hours later we feel like it's finally at about the right level. She's still sedated and may not "wake" up for a few more hours. It's been 11 months since her last surgery so I am really not sure what to expect from her once she's awake. I don't know if she'll be as easily content to lay in the crib.

Her incision looks really good. It is about twice as long as it was and goes directly over her g-tube incision scar. It's covered with the glue and tape rather than stitches and hardly looks new or bloody at all. I think it's going to heal nicely.

They say it is possible we could go home tomorrow, but if not then the next day.We can't wait to get home and see how she does. We can't believe she will be vomit free. It's almost too good to be true.

Oct 17, 2008

Second Birthday Eve

Tonight is the eve of Ainsley's 2nd Birthday and I'm feeling pretty good. Better than last year for sure. I received phone calls from both my birth parents (I was adopted, long story) this afternoon and spoke with them both for quite awhile just catching up as well as talking about Ainsley and her birthday. I think they both knew that it can be a time of mixed emotions and wanted to check in with me. I appreciated that they were thinking of us. It's only natural to reflect at this time about all that happened on October 18th, 2006 the eve of our 10th wedding anniversary, and the days that followed. Last year I found her birthday to be more emotional. Perhaps because the year following her birth was the hardest in my life and her first birthday marked the end of a long hard year. The challenges we faced as a family, the concern for Ainsley's health, the search for answers that were never found, all the practical challenges of having a child in the hospital for 2 months and coordinating 4 surgeries while having two other small children, all the questions, of self-identity and the meaning of life, that the year caused me to ponder, all of it. It was so beyond anything I ever imagined.

Looking back over the second year a lot of good has happened.
  • First and foremost Ainsley has done really well. She has recovered from her hip surgery and is now after 10 months finally able to put some pressure on that right hip. That has lessened my fear that she might never walk. She is crawling around the house and even if it IS at a snail's pace it is so wonderful to know she can get to where she wants to go with a little patience and perseverance.
  • She's developed a sense of curiosity and is really playing. Her world is opening up to her and I know that she will not live a bored life.
  • She started special pre-school at the birth to three center. She has great therapists who really care about her progress.
  • We've developed a good relationship with her new pediatrician who we love even more than Dr. Schuette who'd been our pediatrician for all three kids for almost 7 years before she retired from the practice.
  • Despite our somewhat anti-climatic trip to Cincinnati and their frightening diagnosis of bronchiectasis her lung health seems to be unchanged and is as good as it always was.
  • We applied for the medically intensive waiver program and got rushed through the system. This gives us funding for in-home nursing that our insurance would not provide. We found a great nurse who's working out well. Having her care for Ainsley just two days a week gives me the help I need to restore some normalcy in our lives.
  • I'm slowly learning to trust that after being there for every procedure, surgery and doctors appointment, after hours and hours of research on the internet and with the collective support of my friends on the pediatric trach support group I know far more about Ainsley and her needs and conditions than any specialist who has read her chart.
  • I've come to accept my status as a mom of a special needs child and realize that it's not so bad. It could in fact turn out to be a joy as well as an opportunity to reach others with a message of acceptance and gratitude.
  • I've come to realize that this is not my identity but only a part of my life.
  • And I've come to recognize the issues Ainsley has will be with us forever. Some may resolve but I'm realizing that it is likely that she'll always be special. It's okay because she's an important part of our family and makes us special too.

So this year I feel her birthday will really be a celebration with far more joy than sorrow, just as it should be.

Oct 14, 2008

Ainsley's First Haircut


Before the haircut. Just getting started.


Not so sure about this haircut thing.


After the haircut and a nap.

Ainsley got her first real haircut today. She's had her head completely shaved twice for cranial surgeries when she was 3 and 9 months old. The last time being 15 months ago. This is the first time I really cut her hair by choice. The first two times I cut a curl off to save and let the surgery team do the rest. People often say she has a lot of hair. I can only imagine how long it would have been.

The catalyst for the cut was that about a month ago we started seeing hair breaking off on the back of her head. Sadly it's now only about 3/4 of an inch long at the crown. We think she's been having her hair fussed over too much by a certain someone. So to solve the problem I gave her bangs so we don't have to put the hair up to get it out of her eyes. I've learned over the years that bangs are a no-no. They require a lot of maintenance. And they take FOREVER to grow out once you've grown tired of the constant trims. Evie still has some wispies in the front from when she had bangs when she was 4. I told myself I'd never do it again but here I am doing it anyway. It's better than her going bald, right? Remind me of that when she needs a trim every few weeks.

Oct 9, 2008

Gastric Emptying Scan & Results


Ainsley in the Gamma Camera


I wonder how many more tests Ainsley will have with names I can hardly remember. The surgeon who will do Ainsley's Nissen wanted a Nuclear Medicine Gastric Emptying Scan to see if she had normal motility. When he suggested it I wondered to myself why didn't we already have of these.......Well now I know.

10:15 that's the time we were to show up for her appointment. When we eventually get back to the room (they always seem to be behind schedule) they show me what they're going to do. Give her a bolus feeding and strap her on a narrow "bed" on her back for an hour?! I NEVER put her on her back after a feeding. When I've had the misfortune of her having poopy diaper after a feeding I dread lying her on her back for the 2 minutes of the diaper change. It has frequently ended in vomiting up into the face. (In fact this just happened while writing this blog post. That Nissen can't happen soon enough.) So my jaw drops and I explain that she is highly likely to vomit in that position. I knew that they'd be watching her for an hour but had no idea it would involve being laid flat on her back and for so long. They try to reach the surgeon who is, of course, not available. So we're waiting for 40 minutes for an answer and Ainsley has not had any food since the previous night. She's HUNGRY. And the few toys I brought are starting to get old so I'm really worried that they'll never last another hour.

Finally we get clarification. Yes indeed he wants us to do it. No surprise really. So we strap her onto the bed with this enormous blue velcro strap and the technician uses the remote control to move the camera over her body. It's like an MRI where you are in a tube and they adjust the height so that her face is just a few inches from the tube. She hates laying on her back and is hungry and scared so of course she starts to cry. The nurse injects a small quantity of tracer into her g-tube via syringe. It is radioactive and allows the gamma camera to track the tracer as it moves through her digestive system and show the movement of the stomach contents on a monitor. Then she is given a bolus of formula. We opt for a 6oz feeding instead of 8oz to minimize our chances of her vomiting. I hold her hands and she starts to calm down once her tummy is full. Then I get creative with my bag of toys and come up with games to play for the hour.

I happen to have a plastic fly. I make the fly buzz and land on the machine over her head. Just like a real fly it buzzes and lands, buzzes and lands. She's loving it and is happy and smiling. But buzzing is not great when you have a headache. On the other hand neither is a crying child who might vomit up the tracer and ruin the test. Since Ainsley gets increased sections while crying it is important that she remain calm and happy since increased secretions = increased coughing = high probability of vomit. Thankfully the technician is able to find me some ibuprofen to take the edge off of my ever-increasing headache. Who thought up this stupid game? Oh yeah that was me. Amazingly, I am able to keep her attention with the fly for about 20 minutes. Now only 40 to go....Sigh.

Then we play with a mirror. Sing mirror mirror on the wall, who's the cutest baby of them all? Tap the mirror on the machine. Tap it here tap it there. Uuuuughhh. This lasts about 15 minutes only 25 to go.

Peek-a-boo with a towel. Ten more minutes, fifteen to go.

Old McDonald with some other small plastic animals but unfortunately I have a lion, dinosaur and turtle and not a lot of farm animals.

But we do have a DOG. So we sing "How Much is That Doggy in the Window". But I can only remember the first few verses. It gets old although it's kind of fun to make the dog bark and wag it's tail.

Finally the hour is up. The best part? We get to come back after an hour and get 5 minutes of pictures then come back another hour after that for 5 more minutes of pictures! They forgot to tell me that about these two additional hours. So the appointment that I was told would take a 1 1/2 hours lasts until about 3:00. Luckily today the kids started woodworking class after school so I don't have to pick them until 4:30, rather than the normal 3:20, and I will have time to run home to drop off Ainsley and our nurse before leaving to pick up the kids.

We take an hour lunch break, go back for pictures.

Kill another hour giving her a feeding and getting gifts at the gift shop before going back for the final pictures.

By now she's fallen asleep and when I have to pull her out of the stroller to strap her to the bed for the THIRD TIME she loses it and truthfully I don't blame her. Poor baby. Funny when the five minutes was up I picked her up and told her we were all done and pointed to the machine and signed "all done" she immediately calmed down. She really seemed to understood me! That was cool!

So the results are in and (drum roll)...............she has normal motility and reflux. Exactly what I told them. I had put food coloring in her feeding and it came back in a day so I knew she had normal motility. And it's been obvious for some time that when she coughs the pressure causes stomach contents back up in the esophagus. It also showed no tracer in the lungs but again, I've never seen the dye come out in her trach secretions so even that was what I expected. Basically it was a lot of hoopla to confirm what I already knew.

I've Got A Third Rascal

Over the last month or so Ainsley has become more and more curious and mobile. Lately she's been crawling (slowly) around the house getting into stuff. The toys under the bathtub. She'll pull stuff out of the diaper/go bag (included medical supplies). She'll take all the stuff out of the suction machine bag. Play with the kids scissors if they happen to be left on the floor. A funny one: she unloads the diaper caddy and chews on the Boudreaux's Butt Paste tube. Evie and Adrian think it's hilarious when I scold her, "Ainsleeeeeey, don't chew on the butt paste!" She tried to put my slipper on for me. She's taken all the DVD's off the shelf. She even opened the kids cups drawer all by herself to play all the cups, lids and straws. Mama's proud! Check it out.


She knows she's being a rascal!

I'm trying something new. Here's a link to a slideshow of more pictures. I hope it works.

Oct 1, 2008

God

Those of you who know me personally know that I don't really believe in God. At least not in the way that most people think of, a being who is paying attention to the minutia of our lives and listening to our prayers. But every now and then he seems to call me out. Like tonight.

This is my day: Drag myself out of bed after a night of too little sleep, having gotten up at 3/4/5 am to suction Ainsley because she was coughing. Rush around to get myself and Ainsley ready to leave at 8:30 for the appointment. Help Steve get the kids ready for school. Rush to Children's for the surgery consult, rush home to schedule the surgery because we got tired of waiting for the scheduler after being at the appointment for 2 hours. Write a blog post. Paint the porch for 5 hours. Welcome the kids home from a play date. Say goodbye to the nurse and sign off on her paperwork. Make dinner. Clean while trying to help 2 kids do homework. (Steve is working late to make up for time lost at the appointment.) Get kids ready for bed. Change Ainsley's trach because she's been coughing like crazy. Get Ainsley's tube feeding ready and meds. Did I mention that I'm still getting over a cold? So I'm sitting on the bed with Ainsley over my legs. I've given her a feeding. I'm thinking to myself that the trach change seems to have helped the coughing. She's so sleepy she lays her head on my chest and it feels so good to just be sitting together. But it's been a big day and my mind starts to wander and I'm thinking about the surgery: what if when she gets over this cold she stops vomiting again? Maybe she's finally about to outgrow it. Maybe I should wait a few weeks to see what happens. What if, what if, what if..... And right then I think if God had a hand he'd have slapped me upside the head. But since he doesn't Ainsley coughs and vomits her entire feeding onto my chest without warning. I could almost hear God saying Neaner Neaner. Gotcha! Don't believe in me huh?

The hazy photo? That's because the camera is covered in VOMIT (it's my waterproof point and shoot). If you think it doesn't look too bad, that's because I scooped it all off onto the plate. This is just what was left. I don't think I'll be second guessing that Nissen anymore.

We Scheduled The Nissen Surgery

We just got back from the appointment with the surgeon at Children's. Even though he performs a lot of Nissen Fundoplications he tries to avoid doing them unless he thinks it's absolutely necessary and that it will relieve symptoms for the patient. It's an interesting approach to have a surgeon who is hesitant to perform surgery. He had an interesting thing to say in that her vomiting and coughing is like the chicken or the egg question . I've heard this before but what he firmly said that I liked hearing is: It is unanswerable and irrelevant. She has an irritated airway, issues of vomiting and reflux and a lot of coughing. Is the coughing causing the reflux or the other way around. We will never know. But what we do know is that it's here and we've tried all other possibilities to eliminate the vomiting and they have not worked. We know that she has bronchiectasis, that is damage to her lungs, and that the reflux could have caused it and could make it worse. It is also possible that the swelling of her upper airway (that is the reason for the trach) could be caused by the reflux or vomiting. She is underweight due to the vomiting and inability to tolerate larger quantities of food. And of course there is an issue of quality of life because of the stress it causes for the whole family. Not to mention the additional laundry. (Ha, ha.) Vomiting can cause oral aversion and complicate oral feeding. All in all, a whole lot of reasons why she is a good candidate for the surgery. He did say that there is no way to know for sure that the surgery will resolve her airway issues and there are risks and side effects to the surgery but we are really out of other options. We have to try it to know if it would help her. Because of his approach to Nissen surgeries Steve and I feel reassured that it is, in fact, necessary. It's scheduled for October 21st, just 3 days after her 2nd birthday. It will be done with an open incision as opposed to laparoscopically. I wish I felt 100% at peace with this decision. I've suspected for a long time that it was inevitable. With her starting to crawl in September a small part of me still wonders if it would resolve itself over time. Because she's developmentally delayed it could resolve when she starts walking but when will that be? Darn, I forgot my crystal ball again! But at the same time we've put up with this hell for 2 years. How much longer is long enough? I'm sure once it's done I'll be glad just like when she had her gastrostomy surgery last year.

Sep 25, 2008

Neurodevelopmental Pediatrician Visit

We had the long awaited appointment with the director at Ainsley's therapy clinic today. He is a neurodevelopmental pediatrician so he knows a lot about the development of children with brain differences. He saw Ainsley when she was 2 months old but was unable to give much of a prognosis due to her age and the extremely rare set of conditions she has. We thought perhaps he would have an easier time now that she's started crawling and doing so much more. Over all it was good. Not surprisingly there wasn't a whole lot to be learned. He spent an hour going over her complex medical history, observing her playing on the floor and discussing his impressions of her. Her team of 4 therapists all attended the appointment to hear what he said. They played with her on a blanket on the floor while we talked to the doctor. He said that in cases like Ainsley's it can be difficult to give much helpful information. Since we already know a lot about her various conditions there isn't a lot additionally that he can tell us. Especially so because her conditions are unique to her and there aren't other children like her to compare to.

He was highly encouraged by the progress she's made lately and hopes, like we do, that she will continue to amaze us. He said by what he sees he thinks she will eventually walk! Of course that isn't a guarantee. And we don't know how many months or years that may take.

He said he sees in her intent to communicate and that he believes she will continue to learn to communicate on some level. He recommends continuing to teach sign language and work on using PECS. Of course the fact that she is unable to produce sound due to the trach will be a major deterrent to actual speech. But if her airway opens up enough to allow her to use the PMV (speaking valve) more that would help maximize her chances.

He didn't really get into issues of cognition. I think that will reveal itself over time but is very difficult to predict in children at this age and in situations as complex as Ainsley's.

He is willing to take her on as a patient at Children's. And he said it's great we're already "plugged in" to the medical community and services. The more great doctors on her team the better. She will continue for a year at the clinic and will then move into the Seattle Public School system at age 3. We will start learning about this transition in the coming months. There is a special education program at a local elementary school that would likely be the best fit for her. There are special considerations due to her trach but I am trying not to worry about that yet. But I know the time will pass quickly so it is on my radar. I can't believe Ainsley is approaching her second birthday next month!

I have been working with these people for a year and a half and know how fortunate we are that they are working with Ainsley. Steve has met some of them at our home but this was his first visit to the clinic. He was very impressed with the facility and their style. I think they all love Ainsley and it shows. The fact that they can really see their effort in her progress I'm sure must be rewarding. She has overcome so much and with such a fabulous attitude. Ainsley truly has a way of inspiring people and making friends everywhere she goes. As her mom she even makes me want to be a better person.

Sep 12, 2008

Test Results Are Negative.


The device has been put on the forearm.


Bundled up with the arms wrapped. So exhausted she fell asleep.


Removing the plastic and tape. Ouch!


Collecting the sweat pads for the lab to test.

Wednesday Ainsley had a sweat chloride test for cystic fibrosis. This would be a possible explanation for why she has brochiectasis. Although it generally presents differently. They start the test by applying a solution to the forearm and attaching the device shown. It stays on for 8 minutes and stimulates the area. They an absorbent patch is then placed on the area, is covered with plastic and taped down. Then the arm is wrapped in plastic wrap. That is covered with the sock/sleeve and taped again. They do the same to both arms. Then she is bundled up (sweat pants, long sleeves, sweater & fleece blanket) to sweat. They must collect a certain amout of sweat to perform the test. We didn't take any chances and bundled her up excessively. Fortunately they got enough, the test was done and results came back NEGATIVE. Yea! No cystic fibrosis. At the same time she had her blood drawn to test for auto-immune dysfunction. That too was normal. Hooray! We didn't expect these tests to be positive but were still much relieved to hear that the results were normal.

Sep 9, 2008

Ainsley Started Preschool


On my way to my first day at school.


Here we are.

Friendly faces to greet me on my first day.


Having fun during free play and working with her speech therapist.


Music time. Sitting in my own special chair.
Swinging in one of the big swings in the gym.

We've been fortunate that Ainsley's been receiving therapy in our home from a great clinic nearby for the past year and a half. They've been great and keeping her home has kept her healthy but her team and I felt it was time to try bringing her to the preschool in place of the home visits this fall. We were on the list for a spot and waiting to hear if it was going to happen for sure. We got the call last week. It's in her therapist's classroom and she started...today. It went really well. Since it's a birth to three center all the kids are 3 or under. She loved watching the other kids. We saw 5 of her therapists she's worked with in addition to her care coordinator. So many friendly faces were there to say hello and welcome her to school, how could she not have a great time? Although there were a few tears when she saw her physical therapist Adrienne. We're hoping its due to confusion over her having the same name as her brother. They started out playing in the gym, had free-play, music time, snack and finished up with a good-bye song. Two hours goes by fast! Here are some pictures from the day. What a big girl she's getting to be.

Sep 6, 2008

SHE CRAWLED!

No you're not seeing things and this isn't a tricky title to make you think she did when she didn't. She really did crawl. Last night was the first confirmed sighting. She's slow, and her form is a little "unique". She won't be entering the Olympics for crawling any time soon. BUT she got up on hands and knees and moved with intent to get across the room. Her tummy was a little low but not on the floor, army crawl style, like she had been doing. Adrian and Evie have been at school all week so I think she'd been missing them. They had sat on the rug with a snack in the living room and we were getting ready to read Charlotte's Web. I think she was happy to finally be able to play with them and was curious about their cucumbers and carrots. After about 4-5 steps they moved further across the room. She continued to move toward them another 5 or so steps. In the end she made it from the shelf by the DVD's diagonally across the rug to the leather chair. I got it on high def video but couldn't post it (high def is the problem) to you-tube. BUT I caught her in action again today and she did even better! This time she made it from the living room rug to the kitchen door outside! Seriously! It was unbelievable. And I got some photos this time. It's so exciting I think the neighbors heard me woo-hoo'ing at the top of my lungs. Ainsley and the kids thought I was hilarious!


Whew! I made it from the living room rug, through the dining room and into the hallway.


Stopping to "put on" my sock. I found in the hallway. I know this is where it goes.


Forget the sock. Boy this crawling thing takes some effort and concentration!


Hey! This door is in my way!


Hey! Evie...Adrian....where are you? I made it!


Well now that I'm here how do I get down that darn step?










Video of her in action, making her way through the dining room.

The same day I found her happily sitting in the middle of the living room floor with the diaper caddy. She'd pulled out all the diapers and unfolded them. She'd also strewn the the wipe box, diaper ointments etc. all over the floor. AND had pulled several DVD's off the shelf. This isn't the first time she's taken the DVD's off the shelf, but it's usually been when we put her right in front of the DVD's while watching a movie in the basement. This time she actually had to make her way over to the shelf, across the hard wood to get to them. Usually when I put her on the floor with some toys she's pretty happy to sit and play with them. What this means is that she's starting to get curious and explore like toddlers do.