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.

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.

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.

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!

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.

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.

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.