Our Trip to France: Traveling Overseas with Autism, EE and a Service Dog. Part 1.

Yes, we did it. We took the kids to France and made it back again. It wasn't easy, but it was totally worth it. Worth all of preparation and planning. All of the worry and stress about what could possibly go wrong. The kids, and all of us, had such a great time. Tallulah's face in this photo of her on the beach by the ocean says it all. She loves the ocean and she loves France. We all did. Heck I even started looking at real estate while I was there, imagining a world in which we could move to France, or have a second home there and spend two or three months of the year. Yes, it really was that great to be there.

However, if anyone else ever wants to follow in our footsteps and take their special needs kids and a service dog overseas, I do have a few tips to pass on. First, do all of the paperwork for the dogs travel papers several months ahead of time even if they tell you that you have to have them done 5 days before travel. You will have to do it again 5 days before travel, but at least you will find out if there are any unforeseen glitches. We had a very big unforeseen glitch. When we looked over the list of all of the requirements, we met them all, rabies, check, microchip, check, certification paperwork, check, etc.

The odd little issue that became a game changer for us was that because Dahanna was microchipped after her 2nd rabies vaccination, the USDA refused to certify the vaccination. As if it could have been some other dog who was vaccinated because she did not have a microchip at that time. We didn't find this out until we went in for the 5 days before travel paperwork. In a panic I told the vet to just vaccinate her again, thinking that would make everything ok, but after they gave her the shot I found out that now she was not allowed to travel for 21 days. WHAT!?!?! I did a lot of crying and shouting over the phone, trying to explain that we'd been planning this for months and no one ever warned us that this was even a vague possibility, but it was a done deal. There was no way we could take her.

Brian from Arizona Goldens came up with our solution which was to take Carebear with us instead. We had a few days to work on getting the kids used to this idea, and in the meantime we sent in all of the paperwork for her. Luckily her shots and microchip had been done in the right order. I did get an incredulous comment from the USDA agent, "What do you mean, you have a spare service dog?" Yes, we are one of the few families in the country to have not one, but two service dogs. Because Lu's needs are greatest we decided to spend the last few days before travel focused on Lu and Carebear working together. I was worried about how the kids would react, Lu to being attached to the higher energy Carebear who she often shies aways from when we are at home, and Myffy to having Lu hold the leash for her dog. I was amazed. Both the kids and Carebear totally surpassed my expectations and took it all in their stride.

One of the issues with traveling with a dog on such a long haul flight is the fact that there is no where in the plane for a dog to discretely and hygienically relieve itself. Because the flight to London was nearly 10 hours, plus getting to the airport two hours early for an international flight, plus the two hour lay over and the hour and a half flight to Paris, in all Carebear would have roughly 16 hours inside of terminals and airplanes. Because we weren't doing customs in the UK we were told that there was no way that we could leave the international terminal to take her outside. The solution: doggie diapers. It was a good plan but the truth is that it was such an odd situation for her that she just held it instead. Boy was she glad to see some grass when we got to Paris!

As far as the kids in the airports and the planes, I was actually pretty shocked by how calm and collected Tallulah was through the whole ordeal. Because we were carrying all of the feeding tube equipment, powdered food in cans and medications in bottles, as well as laptops, ipads, iphones and sundry electronics, our luggage got searched, scanned, swabbed, opened and pretty much everything short of making us drink Lu's migraine meds. All of this took a very long time, which wouldn't have been too bad if Myffy had not been really really upset from the moment we hit the lines for security. Usually if Myffy screams Lu throws her hands up over her ears and wails in torment. For some reason in the airport it didn't seem to bother her much at all. Maybe it was all of the other things going on to distract her from the sound. I really can't say. But she was calm and collected and kept hold of her leash and only got upset at security in London when for some reason they picked her out for a full body pat down and she didn't want anyone to touch her belly near the site of the G-tube. I was really upset at this because Karalyn, who went with us on the trip, went through the metal detectors with Lu first and as she was putting Carebear's collar and leash back on while body blocking Lu from running forward a lady came up and started patty Lu down without asking or explaining or anything. I was on the other side of the metal detector holding a screaming and thrashing Myffy, trying to shout at them to stop and let me through. Luckily Karalyn handled the situation well, explaining Lu's autism and the feeding tube and after touching her ankles again they let her go and finally let me get through to them.

On the plane itself once again Lu did great. She settled in with her ipad and was perfectly happy to do her feed. British Airways was great to us in every way. The staff were fascinated by Carebear and truly impressed with her stellar behavior.  Especially when they saw us putting the diaper on her! Myffy had a bit of a harder time than anyone else and I was so glad that I went to that industrial supply store to buy a large box of individually wrapped ear plugs so we had them on hand to pass out to the nearby passengers, along with a card explaining what autism is. It saved a bit of time trying to explain what was going on while Myffy was screaming, and everyone around us was really awesome and supportive about it all. Myffy cried herself to sleep before we were out of Arizona, and slept through nearly all of the entire night flight to London. Lu did her feed and had her meds and slept as well.

All along we were warned that the customs people in Paris would be all over us the moment we got out of the plane, before we even entered the airport and would want to go over every detail of the paperwork for Carebear. And someone did meet us as we exited the plane, a woman in a red jacket who said to follow her. As we approached four police men she said something in French and one of the officers made a gesture with his hand and a pfwt sound with his mouth which I interpreted to mean he didn't really care. At the end of the hall the woman went through a door to the left and waved us on down the hall to the right. It lead to passport control and then on to the baggage claim. I kept waiting for someone to ask for all of this paperwork, but the customs counter was empty and closed. We walked through the door marked Sortie with everyone else from our flight and no one ever asked to see anything. Isn't that just always the way? You do everything you possibly can to be totally prepared, and then you realize you could have not prepared at all. Of course if we hadn't been prepared, I'm sure customs would have been all over us.

The next day we drove to Plougasnou. It was a long drive through the french coutryside, which was lovely and luscious, but as we neared the coast of Brittany, I started to fall in love. Being California born and Arizona raised, I've never spent much time on the Atlantic Coast. It is definitely somewhere I want to get to know better. Lu loved the French countryside too. Just driving around seemed to make her so happy. This is Karalyn the graduate student pictured here in the van with Lu. She came along with us on the trip and was an enormous help with everything. Thanks Karalyn!

I'll write more about our time in France in a few days so stay tuned for Part 2 or Our Trip to France!

Lu's AC Breakthrough

Ever since reading the fantastic book "Brains, Trains and Video Games" by Alicia Hart in 2011, which told the story of her son Ewan who has both Autism and EE like Lu, I have wanted to find a way that an Agumented Communication Device could help Lu to communicate with us. I talked to her SLP (Speech Language Pathologist) and she brought us a Dynavox talk box which at that time was a large and heavy box with lots of icons on it that speak words when pressed. Lu was totally unimpressed. By that time she was already a wiz on her iPad and could get it to do far more than I knew how to do on it. She loved watching vintage Barbie commercials in German on YouTube and even figured out exactly what to do to download new apps. The talk box was big and clunky and looked totally outdated next to her shiny new slick touch screen ipad. I downloaded a couple of really expensive communication apps like One Voice, Proloquo2go, and My Talk, but none of them really interested her and she was so quick on the draw that she could click the home button and get out of those programs before we were able to show her much of what the programs could do. As with most things for Lu it was a matter of motivation and attention and after a few months of fruitless effort which included us taking actual photos of a lot of real things that Lu is interested in in real life, but couldn't care less about on her iPad, I gave it a rest.

At the end of Lu's preschool year, before she moved on to Kindergarden we had an IEP at which the school's SLP mentioned that we could request an AC evaluation. I jumped at the chance. An opportunity to get more information about what might possibly help Lu along is always gladly accepted by me. The team who evaluated her recommended a Spring Board device with the same kind of super basic icons as the old one, but on a smaller and lighter device. Worth a try I thought, so we borrowed one from the NAU Assistive Technology Department for a few months, but it was met with the same distain from Lu as before.

This year a LAMP app was finally released for iPad. This time I was excited. Lu loves her iPad. Maybe on the iPad this program would seem more exciting. We again borrowed an iPad from the NAU AT department that was set up to only have the LAMP program on it and nothing else so she would not be tempted to navigate away from the program to find other more interesting things to look at. We even programmed in an icon for her to request her other fun ipad. It worked slightly better, but just about the only thing she ever requested with it was her ipad, which she could request verbally if she wanted to. So after awhile of us trying and the SLP trying, we eventually abandonded it again.

And then came the ipad mini. I don't know exactly what it is about the mini, but Lu absolutely loves it. Once again we put nothing but the LAMP program on the mini so the only thing she can do with it is use it as a communication device, and finally for some reason, this time it clicked. Maybe she likes the size and the shape. Maybe it's the way the icons look smaller on the screen. Whatever it is she started exploring it. First she learned where the animals are on it, the pets, the farm animals, the zoo animals, and then she started checking out the toys and the food. She asked for hot chocolate. Not chocolate milk which she has asked for before, but hot chocolate which she had only had a few times. We discovered that she loves hot chocolate but didn't really know how to ask for it. Then she asked for grapes. She has never asked for grapes before. I thought maybe she was just poking buttons to see what they would do, but she really seemed to want grapes. She also asked for tacos and hotdogs which she had never eaten before and seemed disappointed in once she got the real thing, but at least she was trying and asking for new novel things. And then the most amazing break through of all. Stew came in from work one day, kind of dirty and a couple of days unshaven. Lu was doing her feed on the sofa and he knelt down to say hello and he asked her for a kiss. Lu's version of a kiss is to either put out the back of her hand for us to kiss or to lean her head forward to allow us to kiss her on the forehead. She let Stew kiss her hand this time and then looked down at her ipad mini where she found the body parts section, and then pressed on 'beard' then she went back to the home button and found 'no'. She made the box say 'Beard no' and then repeated it while putting her hand on Stew's face. She didn't like his stubly beard. This was something that she has never had any way to express. How long has she not liked it when he tried to kiss her with an unshaven face? Possibly always, but she could never tell us before. Stew and I looked at each other amazed, then he ran to the bathroom and had a quick shave. When he came back smooth-faced with a few cuts here and there he knelt down again to show Lu. She put her hand on his face and smiled. He said 'no beard'. She said 'no beard'. And I think I was pretty close to bawling my eyes out. Since then she has been saying all kinds of things to us with the ipad. Some of it makes sense, some of it doesn't. She is still exploring and playing with a lot of it. But another great moment was once when she touched the icons for lion, then tiger, then bear. She hit the talk button to make it say 'lion tiger bear' and then looked right at me and followed it up with 'Oh My!'. I knew exactly what she wanted then. She wanted to watch The Wizard of Oz.

That one little experience of Lu figuring out how to ask me to watch The Wizard of Oz made me marvel and the thought and effort she has to put into something that is so thoughtless and automatic for most of us. And I think that it really goes to show that a lack of speech is never indicative of a lack of thought. Lu has to put so much thought into how to help us understand what it is she is trying to tell us.

Here is a little video of Lu using her iPad Mini to let me know that she wants Goldfish Crackers and Pizza! Unfortunately I have yet to find a decent tasting wheat and dairy free Goldfish Cracker substitute. If any of you other EE moms out there have found some please write and let me know.

Some Progress. Finally.

In my last post I listed some of the many medical things going on with the kids these days and how much we were hoping to have some really answers soon. And finally it seems that a few answers are forthcoming. Myffy saw the ENT who has put her on a course of mild topical steroid treatment for her adenoids delivered by nasal spray which he said we would know was working if her snoring decreased and her sleep improved. Almost immediately we noticed improvement! The past several nights have been some of the best sleep Myffy has had in ages! 

The past several nights have also been the start of Lu's trial of a migraine prophylactic medication that has a strong sedative side effect. And she has been sleeping better once she gets to sleep. When I have asked her if she has ow and touched my head and then pointed to her head, instead of touching her own head and saying ow the way she usually does, she looked right in my eyes and said no! The first time we gave her the new med we thought she was having an anti-sedative reaction to it the way she did when the dentist tried to give her valium in order to work on her teeth. It seemed like she was on speed or something. Totally manic, jumping, screaming, laughing uncontrollably. Not that she doesn't have those moods on her own without any medication at all, but the fact that every night we've given it to her she immediately has this manic half hour to hour and a half or so and then very suddenly dropped into sleep like dropping a stone, makes it seem connected to the medication. The first night I had stepped out of the bedroom to let Dahanna outside and then brought her back in and I heard Lu call out "Mamma!" By the time I got back into the bedroom and climbed up into bed next to her she was so soundly asleep she didn't even stir as I covered her and moved her ipad out from under her arm. The second night was similar though that night she got up after doing her feed and was manic for quite awhile before I managed to coax her onto the sofa to watch Tinkerbell 'The Secret of the Wings' with me and cuddle until she was just on the edge of sleep, then I carried her into her own bed and snuggled until she was out which took about 2.5 seconds.

Lu's glasses also seem to be helping with everything quite a lot. The fact that she really wants to wear them, keeps them on all day and only wants to take them off to go to sleep leads me to believe that they are helping her see better. And all of us have noticed that she looks at things for longer periods of time where before it seemed like her eyes darted from one thing to another pretty quickly. And her coloring and drawing have suddenly taken a dramatic turn towards precision and figurative representation. 

The other day she drew this drawing at school and when Madison, her school aide asked her what it was Tallulah told her that the main figure was a horse and that the drawing in the upper right area was eyes and that the small figure in the lower right was Dahanna. In the past she has often asked us to draw things for her and then colored them in and she always loves coloring in coloring books and stuff like that, but she has never completely free hand come up with a figurative representation this way. It is all very very encouraging. 

Now we just need to get through Myffy's endoscopy and biopsy to check for EE in a couple of weeks, get the results and act accordingly, and then I will hopefully finally feel like we are on top of the kids' medical concerns again. Whew.

One procedure leads to another

The past few months have been fun for the snow and the holidays and all, but in the midst of it we have been busily racing down rabbit holes trying to solve the all of the kids' medical mysteries.

The sleep study in November gave us a diagnosis of obstructive sleep apnea for Myffy, which wasn't too much of a surprise. My sweet little 24 pound elfling sounds like an enormous old man when she sleeps, snoring long and deep with scary halting breaths that keep me awake worrying that she has suddenly stopped breathing. I've always blamed that horrible bout of RVS she had when she was only two months old that kept her in the hospital for a week and required her to take an oxygen tank home for sleeping at night. But now they think that it might be the adenoids or the tonsils. I really hope it is the adenoids or tonsils because either of those would be super easy to fix. Just a small surgery, a day in the hospital, something plenty of kids have done, and presto! Her obstructive sleep apnea would be no more! Fingers crossed that's all it is. Especially now that Myffy herself has been scheduled for an endoscopy by the GI doctor because her 1 pound of weight gain in the past 18 months is worrying to us all. Luckily she was a super hefty baby so this year and a half of stagnant weight leaves her still within normal weight and height for her age, even if she is now on the low side.

The major concern is that she may also have EE (like autism there is a very high sibling incidence) however because we have all been on a restricted diet for many many months, she may be having a subdued reaction which is harder to detect than Lu's original projectile vomiting symptom. Mainly Myffy makes strange throat noises while she sleeps, labored swallowing in between the snoring, which could be the sleep apnea, or GERD, or minor reflux, or EE. So for the moment we have been instructed to let Myffy have every allergen she can get her hands on so that we can get some reliable results for the endoscopy next month. Access to some real dairy ice cream and wheat based breads and pizza crusts might put a few pounds on her as well. Fingers crossed she will check out ok. The thought of putting her on Elecare Jr is pretty disheartening. If she does check out ok I can't help but think that sleeping better will help her appetite and all other areas of life as well.

The surprising thing about the sleep study was that nothing at all showed up for Lu. No abnormal results. No skipped sleep phases. No low oxygen levels. Nothing. Granted they weren't able to quite get all of the gear hooked up to her, but I was really hoping for something, nothing awful, just something easy, something that could be treated and fixed. Instead we have nothing. No results from that, still nothing from the unsuccessful eye exams, no explanation for the headaches or sleeplessness. We discussed with the doctor trying to do a sedated eye exam and sinus x-rays, but in the end we all concluded that if she needs to be sedated again we might as well go for the MRI which will show us the most. So last week we did the MRI here at the Medical Center in Flagstaff and today I got the results.

It's so strange waiting for results for procedures on my kids. Usually the result everyone wants from any medical test is the all clear, but instead I always find myself hoping that they comeback with something that is easily treated instead. I don't want anything to be wrong with my kids, but when they scream in pain and don't sleep at night I can see that something isn't right. So I want a reason. A solution. A plan of action. The results that came back today for Lu is an abnormal amount of fluid around the optic nerve. It might not be anything. It might be something. It might be causing enough pressure to cause the pain. It might be a symptom of something else going on with her eyes. But just from the MRI we really don't know. So just now I scheduled her into the pediatric eye center in Phoenix for a thorough and once again anesthetized procedure to dilate her pupils and examine all the parts of her eyes at 8:15 tomorrow morning. On the one hand I am completely relieved that there are no tumors, no major malformations of the brain, no obvious and dangerous swellings inside. I am glad to know that the worst isn't there. I'm also slightly relieved that something showed up because if nothing at all had we would have hit a dead end with no way of knowing how to offer relief. And yet what we are left with now is yet another procedure to explore and try to find the cause. Can I cross my fingers three times in one post? Sure why not. Fingers crossed!

Freedom!

The rest of our California trip:

After 2 days at Disneyland we took a break from the park to do a couple of other LA area things. Sunday morning we drove up to Pomona College to visit an old friend and see my Dad's skyspace on campus in the courtyard by the geology building. I had visited the site back in 2007 when it was still under construction but had never made it back to see the completed piece. I was glad we went. It's a real stunner. Any James Turrell fans out there should put this on their 'must see' list for sure.

Unfortunately Lu was pretty freaked out on the drive there and as we drove around campus to park. To be honest, she tends to get really anxious and freaked out whenever we drive around in a city with big buildings. Parking garages in particular seem to set her off. She isn't able to explain why this is to us yet, but my best guess is that the main multi-story building with parking garage she has ever been in is Phoenix Children's Hospital with the Flagstaff Medical Center a close second, both of which have been the sites of numerous appointments, tests, procedures and surgeries. She reacted to the beautiful buildings at Pomona in much the same way.

However once we managed to coax her out of the car and she realized that we weren't going anywhere scary, something beautiful and amazing happened. In the middle of campus there is a long, lovely green, surrounded by tress and buildings with no cars in sight. Because Lu's instinct is to bolt whenever there is open space in front of her, for her own safety she has never been allowed to walk through a door to the open outside without holding onto someone's hand and more recently also holding onto Dahanna's leash.

It is my acute and ever-present terror of her coming into contact with a moving vehicle that is the cause of this. This is not an unfounded fear. We had too many early close calls to ever risk being negligent about this. But at the same time, it is heartbreakingly sad.

Sometimes she seems like a colt stuck in a stable who desperately wants to just get out there and run. I sometimes wonder if she would do so much jumping and pattern walking if she were just able to get out there and run.






It is my hope that as she gets older, with the help of Dahanna, she could learn to do track and field, or maybe even long distance running, if there is a way to keep her safe while she is doing it.

 Because there on the Pomona green, we let her go and she got a taste. Freedom. Her happiness was palpable. She loves to run.









I don't mean to say that she has never run before, she gets to run at recess and during PE and at the completely fenced in park where we go to play in Flagstaff. And we try to give her lots of physical activity with both the big trampoline in the back yard and the two small ones we keep in the house. She goes for pony rides and outings. It's not like she never gets to do anything or go anywhere, it's just that someone is always holding on to her or is right there within arms reach to slow her down if she gets going too fast.

After a good old run at Pomona, we left to meet some of Stew's friends at the beach. We went to Huntington Beach which the GPS said was only 15 minutes away from our hotel. Somehow it took us over an hour to get there with Lu getting nervous as the drive went on. But when we finally got there, another revelation! It was a dog beach so we decided to let both Lu and Dahanna have a break from their leashes. This was a very difficult thing for me. Back when Lu was first being diagnosed I had this recurring nightmare where I was at a beach, knee high in the water, holding Myffy in one arm and holding Lu's hand with my other hand. Suddenly, out of no where, a huge wave hit us and we were all knocked back into the swirling water. I managed to stand and pull Myffy up above the water but I had lost hold of Lu. My instinct was to dive back in to search for her but I was afraid of drowning Myffy in order to try to save Lu. I would wake up thrashing in bed in a sweat as if swishing my arms through the water searching for her.

I told Madison about all of this before we got to the beach. I told her that I would need to stay with Myffy and I was trusting her to always have Lu. She and Lu worked it out that as long as Lu ran along the beach Madison would run along side her, in between Lu and the waves. Lu could go into the water if she wanted but had to hold on to Madison's hand. It worked out well. Lu ran to her heart's content, she and Madison both got wet, and Myffy and I played on the beach while Stew had a chance to visit with old friends and do some wading out into the water with Lu as well.

I think as much as taking the kids to Disneyland was a triumph for the family, taking Lu to the beach was overcoming an enormous fear for me. And I realized that sometimes my fears for her safety may be stopping her from experiencing life. We're not about to remove all of the safeguards we've set up for her, but at the same time, with the right people who I know I can trust, I think that it is time for me to start letting go just a little in order for her to discover more of the wonder and joy that life has to offer. Wind in her hair. Sea spray on her face. Pink-cheeked exhaustion. Freedom. Happiness.

WE DID IT!!! Our Autism/EE Disneyland Adventure!

Well we did it. We took our kids to Disneyland! A year ago I didn't think a trip like this was possible. Back in January I even wrote this post called Disneyland and the Dog about how we couldn't imagine being able to take our kids to Disneyland before learning about Arizona Goldens' Autism Service Dog program. And now, less than a full year later we have accomplished an enormous family goal! We have gone on our first completely non-medical family vacation in 5 years and did the fun kind of things that other families do with their kids.

There were a few hiccups and tough times along the way, the drive was long and mornings and evenings so off schedule caused a fair bit of anxiety for the kids, but the actual time spent in the Disneyland park itself was so much better than I could have hoped for.

We decided not to buy multi-day passes ahead of time because I am so used to the things that we expect the kids to like the most turning out to be too difficult or traumatic. I could just see us getting there and the crowds and noise and motion being too much for the kids to handle for more than just an hour or two. I fully expected to only stay 2 or 3 hours on the first day. But thank goodness we planned ahead and brought Lu's tube feeding equipment and food with us in back packs into the park. We stayed for more than 7 hours and walked more than 5 miles inside of the park for 2 days in a row (thanks fitbit step tracker)!

 I need to give some credit where credit is due here and a ton of credit goes to the lovely Madison, Tallulah's one-on-one school aide and one of her home ABA interventionists; as well as credit to the also lovely Dahanna who was a total star! The way we worked things was that Madison mostly was in charge of Tallulah and Dahanna, walking with them both, giving Dahanna commands, holding Lu's hand in one hand and Dahanna's leash in the other, keeping the two leashes from getting entangled and the rest. I was in charge of Myffy and had a back pack with just the feeding pump, bags, tubes, adapters and syringes in it which is not very heavy in case I needed to run after Myffy or jump in to help Madison with Lu. And Stew was in charge of everything heavy and everything else; the stroller, the cold bag with Lu's food in it, and another back pack with all of the other stuff we might possibly worst-case-senerio need.

Dahanna did a great job of navigating the crowds, waiting in lines, keeping our group together like a sheep herding dog and riding all of the rides with Lu but one (that one was the Dumbo ride which I was afraid to put her on because I had this momentary vision of her hopping out of the Dumbo when it goes up and down in that shakey way, it was the first ride we tried and it took me awhile to realize that she can handle pretty much anything we can). The people around us marveled at her calm demeanor and professional air as she hopped in and out of all the crazy shaped ride cars and never even batted an eye when the Pirates of the Caribbean ship plunged down into darkness and water sloshed in, getting her pretty well soaked by Lu's feet.

One thing that I was really impressed with on this trip that I never even noticed as a kid was how alert and awesome the Disneyland Staff are. Maybe this was accentuated by having the service dog which is a very visible sign of a kid with a disability, and maybe it was having the guest assistance pass which put us into the disabled lines, but even when we were just walking around and trying to get food I felt like the staff were constantly watching, ready to help and totally on the look out for kids in distress.

When we went to eat the chefs came out to talk to us about the kids' food restrictions, and even though Lu never actually ate anything by mouth the whole time we were in the park, I so appreciated their willingness to make up special food that my kids could safely eat. We got gluten free rolls, BBQ meats that were not dredged in flour and had a special sauce, pancakes and burritos that were gluten and diary free. It was great. Myffy ate a ton of everything and hopefully next time we go Lu will be interested in eating as well. Normally Lu does not like doing her tube feeding anywhere but in her own bed at night, on her beanbag or on the sofa during the day, and she will let us coax her into feeding at the dining room table with us as we eat dinner for 15-20 minutes usually before asking to  move to the sofa. So even though we brought her feeding stuff with us, I was pretty sure she would want to go back to the hotel. But she didn't. She let us hook her up right out there in public at the tables of the Disneyland restaurants. And she hardly even seemed to notice.

On the first day there it wasn't until half way through lunch that I realized that I'd completely forgotten to bring Lu's ipad which is usually the only way we can get her to sit with us through a meal. I felt a moment of panic but then looked around and realized that everything around us was better than a life-sized ipad. All day long Lu's face had the most amazing glow of happiness. And once she got used to the routine of waiting in line and then going on rides, she eventually didn't even seem to mind the wait too much. Especially once she got tired and wanted to sit in the stroller while waiting.

We rented the stroller with Myffy in mind because her legs are so short and she is a pretty slow walker, but she would not go in it even for a moment. She wanted Mommy up and no one but Mommy. So I carried her. All the time. For over 7 hours and over 5 miles a day, two days in a row. And boy was I feeling it by the end of the second day. I was so glad I could look forward to that chiropractor appointment I'd made for a couple of days after we got back. I made a mental note to schedule a massage as well. But aching backs aside, it was an awesome trip and we never even came close to my worst fear of losing a child at Disneyland.

It was a couple of long hard days, and Myffy didn't quite make it without a little nap in line for It's a Small World (which I think we rode 7 times during the two days), but all in all I'd call our Disneyland Adventure an unqualified success!

Myffy's Birthday, a new medical mystery and getting ready for Disneyland!

My sweet little Myffy is now a big three year old girl! Turning three has become an interesting rite in our family because besides being a significant milestone for any child, at three our kids also age out of the Arizona Early Intervention Program and age into a whole new set of agencies and services. Especially now that Myffy has her official diagnosis of ASD.

Myffy's party was super fun. We decided to keep it small and a bit on the down low since that is what usually works best for both kids. In the past when we have packed the house for a party that is usually when Lu gets overwhelmed and needs to retreat, and even Myffy seems to prefer smallish play dates to having tons of people around. And this way everyone got to have a couple of turns on the pony.

It was really nice to see Lu and her best friend from school playing together. Can I tell you how exciting it is to write 'best friend' about Lu? But it's true! They hang out at school and have been having regular play dates on the weekends lately. The best thing is that her friend seems to really enjoy Lu's company without getting frustrated or bored by the lack of conversation. They jump on the trampoline together, paint together, draw together, swing together, run around together and basically just hang out, together! It's so great. And at Myffy's party they rode Lu's pony together.

As the Birthday Girl Myffy of course got lots of pony rides! In the past she has only seemed vaguely interested in the pony, sometimes wanting to get up with Lu if Lu is riding, but never all that interested in riding herself. Today all that changed. Which is probably good since Lu is going to out grow Cinnamon someday and like all other things between siblings, Cinnamon can get handed down.

I love how happy she was to be up there and she even said 'yeehaw' and 'giddyup' like Jesse from Toy Story, and then said 'more riding horse Mom,' when she wanted another ride. Gotta love an expanding vocabulary!

In the midst of all the activity of Myffy's birthday and starting her new school with her own IEP and services and everything, some new things have come up with Lu. Lu seems to be having head aches. Regularly. Pretty much daily. But not constantly. Intermittently. She shows her distress by pressing her fists against her forehead, sometimes hitting, sometimes pressing her palms hard against her eyes. She has started hitting her head on the wall again which we haven't seen in ages except for a little bit during the failed food trials last summer. She has also been saying "eyes" a lot while opening her eyes wide as if to show me. I have looked for something in her eyes but have not seen anything. Sometimes she rubs them. Often she cries. And she is grinding her teeth loudly. The teeth grinding is actually the first thing that we noticed. It's been going on for several weeks. We saw the dentist (an ordeal in and of itself) who saw nothing in his exam to make him think it was dental pain, but suggested we get dental xrays- something they have never been able to accomplish with Lu before. We saw a new doctor who had several ideas but wanted dental xrays first. A dose of valium and versed later we were able to get decent xrays on the second try. The dentist was so thrilled with actually being able to work on her that he asked that she have versed before every appointment. Sigh. We also saw her GI doctor to have her mic-key button replaced. Which is completely terrifying to Lu. That doctor also suggested that we sedate Lu before every clinic visit. Even just the check ups. I'm really struggling with all of these requests to medicate her. I understand why they ask. She is difficult to examine, difficult to work on, distressing to other clients and clearly expresses her terror. But seriously, how much sedation can one little 5 year old take? I'll probably come back to this in another post.

But back to the headaches: her dental xrays came back with a little decay showing, not enough to cause pain and not even enough to warrant filling right now. The dentist suggested filling it at her next cleaning which he thinks he can do with versed. Otherwise we have to book her into the hospital with full anesthesia to have a small filling done. The new pediatrician wanted to rule out dental pain before xraying the sinuses and then moving on to other imaging, like MRI or CAT scan. And then there is the possibility that she might be developing migraines. Both her paternal grandmother and a paternal aunt have migraines. Which of course won't show up on any of these scans. The symptoms are affected by a dose of children's ibuprofen which I though would rule out migraines, but the doctor says not necessarily.

This is one of those many, many moments when I wish that Lu could communicate enough to at least tell us a little more about this pain. Where is it? What does it feel like? Is it there all the time and just gets worse and better or does it completely come and go? Is it all of a sudden or does it slowly build? Is it a sharp pain, or more like pressure?

Oh and then yesterday I got a note from school in her bag saying that they tried to test her eyes and recommend that she see an eye doctor. One more possibility. If she has vision problems, that could be causing pain too, right? So today my list is full of new appointments to make and new conversations to have with various doctors. And probably a call or two to the new secondary insurance company since we were informed last month that Lu's old Medicaid insurer Capstone (who we never had a single problem with) was suddenly no longer her insurer.

In more exciting and upbeat news we are also starting to prepare for our long awaited trip to Disneyland! I've ordered Lu's tube feeding supplies to be delivered early and her prescriptions as well. I've started making checklists for packing to make sure we have everything we will need for the kids and Dahanna for as many contingencies as I can imagine ahead of time. I need to find out where the closest stores that carry allergen free foods are relative to the hotel and figure out which foods to just bring with us. I'm nervous but excited. I really hope they will love it. Fingers crossed!