Good Visibility Ahead Of Us

Well, our date with the new neurologist for the ketogenic diet was pushed back to January 9 (we booked the wrong type of appointment, and I had no idea there was more than one type)! So we are playing with meds in the meantime to hopefully get these damn seizures a little more in control. They have gotten a little better, but that could be because of the meds or because he has been fighting some little mystery virus all week- often when kids are sick, the seizures subside, for some crazy reason. Anyway, Harrison, aka Rumplestiltskin,  has slept through most of the week and finally stayed home from school today, and with some rest and some Albuterol he is feeling much better already!

The good news is...we saw the eye doctor yesterday and she was able to get a reading for the first time (don't ask me how) and his eyesight is ...drum-roll please...20/20! Hurray! 

Sailing On

It has been a month, and Harrison is enjoying (we all are) a nice stretch of good health- hurray! Maybe when we reschedule his procedure, I should just surprise him when we get there. 

In the meantime, Harrison has made some great developmental strides. He stands for a long time (at least the length of something Mommy has recorded on tv!) in his "stander/gait trainer" and he continues to get stronger and stronger with supported standing and walking, and in general. He has been using a "walker" at school, and walks across the whole classroom (with some help)- I will have to get some tennis balls for the old man to put on the bottom! 

His new trick is to literally scoot his butt to the edge of the sofa and jump off on a count of 3 while he holds my hands- he is so proud of himself! 

 

His upper body strength is better too, holding himself up straighter and wrapping his arm around my neck when I hold him...I LOVE getting those hugs!

Harrison also practices eating every day. He likes lots of different tastes and textures...egg and cheese, salty pretzels, avocado, cottage cheese, apple butter, yogurt, peppermint ice cream, pudding, cookies, sweet potato...

It's really impressive, how far he has come- eye contact, responding, reaching, grasping, clapping, singing and making lots of noises, waving- especially since his seizures have gotten much stronger and longer, and they definitely interrupt his development, especially when he sleeps for 20-30 minutes after a bad one. He is not in pain, but it sucks nonetheless. We see a new doctor in a few weeks and we may change his diet...more on that when we know.

Overall, I look at him and am thankful every day that this child is as happy and motivated and ambitious as he is. He works so hard, yet he doesn't seem to get too frustrated when he struggles, he just gets up, shakes it off, and goes again. I should learn from him.

Missed It By That Much

Oh we were so close. Friday Harrison woke up with a cold, again. By Friday night he was full of green icky stuff and actually spiked a fever, which very rarely happens, so off to the ER. We got there at 4am, and up to our room at 10. He only stayed one night, really just needed some heavy duty antibiotics, and now he is home, playing hooky from school again. 

We will probably have to wait until April or May to try again to remove the trach. I am guessing May, when allergies may relax for a little while. UUUUGGGGGHHHHH

So, we will just keep on keepin on...

The Lighthouse Is In View

My heart is racing...we got a call yesterday that there was a cancellation and Harrison can go in THIS MONDAY for his bronchoscopy and hopefully decannulation!!! We are ready for a nice, relaxing, mellow weekend...maybe go get our pumpkins, take a ride to see some of the pretty foliage, watch some football, and just chill.

We go in Monday morning, and if all goes well, we will stay for 2 nights I think. Stay tuned...

Meanwhile, you know what this means- lazy mom has to actually put together that Halloween costume she has been wanting to do since last year. Hmmmmm...

On another note, this is interesting: I may have mentioned our gripes with a certain department in the state and their stinginess with providing nursing hours. Well, thanks to some incredible families, including my husband :) and also some very logical and intelligent individuals in the Department of Public Health (I think), there is now a moratorium on the practice of decreasing nursing hours at all! Until further notice, I guess. A HUGE victory for families with children who are "medically fragile."  I got a call from our case manager who told me this (I already knew, I was in the loop long before she was) and also that she was cancelling her visit to evaluate Harrison's needs. I said, OK, GREAT. I am telling you, this woman sounded like she was calling to tell me someone died. She sounded so defeated.  I will say, she did come through in the end for us, and managed to extend our nursing authorization through February, so that we won't lose all the (100+) unused nursing hours we continue to bank each time a nurse calls out and there is no one available to take the shift- we would have lost them in November. Many Many Thanks!!!


OK, so now we just get through the weekend. Harry, stay healthy please. You are a little junky today, it must be the weather. All in all you're good to go...we are all rooting for you, including your puppies!

Just A Mirage

Well, we had to reschedule. This cold Harrison has is a nasty one, poor baby. He is miserable, but he is a trooper, as always. The new date is October 31. Yep. Halloween. Missing another one. That's two, and he has only been around for four of them. I will bombard him with chocolate when he gets home, he'll LOVE it!

I had a great costume in mind too, and now I have 13 months to figure out how to make it with my limited art skills. 

Not really as nice a start to the new year as we thought it would be, but that's how it goes, and as the British say, Keep Calm and Carry On...

Is That Land In The Distance?

The countdown has begun, and our big day is quickly approaching. It has been almost a month and I have managed to stay quiet and calm and get through each day, and now I am just hoping and praying that the ickies (aka: cold?) Harrison has managed to pick up this weekend will go away by Friday. Or maybe it won't matter?  I am about to whip up a batch of chicken soup to squirt right into his Gtube...I'll just puree the matzah balls and the noodles so it can all go in together, yes?

We do feel extremely lucky to have amazing friends and family who have been incredibly supportive and are cheering for him every single day...BIG SHOUT OUT to you! It has helped us tremendously and continues to help us, filling in the gaps left by the ones who would be by our sides every moment if they were still with us.

OK, clearly it is starting to hit me, and I am having some random emotional moments, and this is just the pre-game. If...WHEN...all goes well on Friday, I promise I will be crying hysterically for an indefinite number of days. Kind of like that meltdown you get after finals (especially RPCS finals)... so please forgive me if I cannot hold a conversation over the next week or two. And please, remind my husband that he is doing all he can do, and there is absolutely no possible way to calm me down before my soul is ready to relax. But he might need to sit on me to keep my heart from beating out of my chest over the next few days. Thank goodness for his calm manner, one of us will have to be focused to keep the house, the dogs, the children, life, in order!

I am hoping that this morning we changed Harrison's trach for the last time...and that when he comes home next Sunday I can toss a lot of supplies into a big bonfire...party info will be posted!

Keep sending those good vibes, please please please!!!

xoxoxo

Talk About Dragging Out the Process

It seems that we have been able to add a new word to Harrison's vocabulary....are you ready for this? The word is "NORMAL," as in "Harrison's sleep study was NORMAL!!!!!!!!!!"

I know, I can't believe it either!!!!!

So can we get rid of the trach?  Nothing is straightforward with this kid...

Our trach doctor has always been somewhat nervous about Harrison's seizures, since the root of this evil does seem to be neurological, all those random, unidentifiable airway obstructions, so Before we schedule anything, the doc wants to confer with the neurologist...ok, he is out of the country...so let's put something on the schedule, we can always change it. (By the way, Harrison's seizures, knock wood, don't seem to effect his respiratory status)

So here's the plan: on Friday September 30 Harrison will go to the operating room bright and early for a full bronchoscopy, where they can look at his entire airway to make sure all is well and good. Then, he will be admitted to the ICU and then, out comes the trach, and then he is monitored for 24 hours. Then, whereas most kids would go home, Harrison will of course go to a regular floor where he can continue to be monitored for another 24 hours (it's fine, really, although we will be kind of bored hanging out there over a weekend, but we'll deal with it, trust me!)  Always making things complicated, this child is.

The hole should close on its own fairly quickly.

This is where we are. Yes, I am going crazy with excitement and anticipation on the inside, and my nerves will be shot as it gets closer, but I am trying not to dwell on it and I have learned to expect less so that I can be pleasantly surprised rather than grossly disappointed (who am I kidding, of course I will be grossly disappointed if it doesn't happen, but I figure, rather than holding this news in, I'll share it and then you all can pick up the pieces if our hopes are dashed, right? RIGHT??). Let's just see how it goes and hope for the best. 

It will be the second day of Rosh Hashanah, and I cannot think of a better way to start off the new year! Harrison, L'Shana Tova Tikatevu...May You Be Inscribed in the Book of Life for a Good Year (and lifetime)!

Quiet Night

Sleep Study, Part II. 

This past Sunday night could not have been any more different than the first try we did in June...WHEW!

Harrison has been feeling good, happy, healthy. Our nurse was one of our regulars (we love you Lauren!), we had two very sweet ladies from the sleep lab work together and calmly to attach the EEG leads to Harrison's head, wrap it all up nice and neat, and then talk to him and play with him afterwards to make him forget all about the hour long tantrum he had while they were working. He fell asleep easily, and believe it or not, Mom even slept on that awful cushion they put in the window seat (albeit with very strange dreams about being in that very spot and NOT able to fall asleep because of the 5 people talking in the doorway, who really were not there...what was I drinking?) He had a good night's sleep, and to boot, they let us out early for good behavior! (Usually we would not get discharged until noon but they let us go by 9:30AM!) His O2 SATs were good (blood oxygen saturation) and there were no incidents. Results I hope this week, but I think it went well...YAY!!!!!

Stay tuned...

Trust Your Instincts!

Sunday was definitely a rough day, and we are sooo glad we cancelled the sleep study, because Harrison was up Sunday night from 1:15 - 4 am! It is rescheduled for 2 weeks from now, Sunday August 14. I still have the two movies I downloaded, and our nurse for Monday (the next day) is back from her honeymoon so as soon as we get home I will have a desperately sought date with my bed.

Sunday was one of those days when everything was in question...in other words, I put a phone call in on Monday to almost every specialist he sees. Also that day, my friend mentioned that there was a nasty virus going around, and at that same time I noticed that Harrison seemed to be more and more himself...usually, when I reach the point of calling every doctor, things do seem to right themselves very soon after ("I swear the engine was making a funny noise on the way here!") and, you know what...that's fine. It probably WAS a virus. See, when he gets a virus, it's like the robot whose wires just start smoking and everything goes haywire. His systems that are already weak are the first to react...and then Mom reacts, and Mom usually has the bigger meltdown, and then he rests and things start getting back into place, and Mom is calling the handyman to fix the holes in the wall from where she banged her head repeatedly. Anyway, on these occasions I am more than happy to be wrong (was it the vitamin we started? the new foods? does he need a higher dose of a medication? is it the heat?) Yes, I am happy to worry for nothing. He, hence I, had a much better day yesterday, Monday, and he had a great day in school today. In fact, though he screams for DSS when I put him in the bath or try to dip his feet in the neighbor's pool, he actually sat in the kiddie pool at school today and was, so I hear, delighted! HURRAY!!!  He's gonna be sorry they told me  :)  heh heh heh

He is enjoying tasting different foods and trying new textures more and more, as well. These days he likes (loves) whip cream, the inside of a peppermint patty, chocolate brownie or ice cream, ketchup, pasta sauce, some dressings, some cheese, blackberry yogurt, Gerber Puffs (broken into tiny pieces, that I stick on my finger and then stick onto his jaw- but he is actually chewing!), and even a little sip of his milk if I squirt it into his mouth from a syringe. Here's the best one though...the most solid thing I have given him and he does really well with, is a little bit of those Laughing Cow cheese wedges stuck to a little piece of bread (the inside, the good part, the soft part that we used to roll up...am I the only one that did that?)  Anyway, he liked it!

As you can see, eating is hard work for him, but he does enjoy it and that is the first step to becoming a pig like his mommy. No one can say this family doesn't know how to enjoy a good meal.

Rescheduling

Rough night, has had better days...decided to reschedule sleep study. Hopefully sooner rather than later. Stay tuned...

It's a Big Ocean

Lots going on lately...where to begin? Luckily my RPCS education taught me to outline before I embark on any piece of writing, so I will just consult my notes...

John, James, Harrison and I went a couple of weeks ago to Storyland...a very cute amusement park for small children in the beautiful White Mountains of New Hampshire...Harry slept through the whole thing, both days. Enough said? It was pretty hot. He did enjoy the car ride (air conditioned car ride, I should say) and he absolutely LOVED being with his big brother the whole weekend! Soul mates.

As I mentioned, we have scheduled Harrison's second sleep study, and it is coming up this Sunday, July 31. I have already downloaded 2 movies for my long night ahead, plus I have a book about his particular type of vision issues, Cortical Visual Impairment (neurological, as a result of the seizures, not anatomical), that I have been meaning to read for quite a while now. I don't know if I am as confident about this one as I was for the first one, because we don't know why he was obstructing his airway. Is it neurological? Is it because of "low tone" in his oral motor skills, and his tongue is drifting back and blocking his airway that way? As another infamous Harry says, DUNNO. If this one does not go well, we really have to think about what we (and I mean you brilliant doctors of Children's Hospital Boston, ahem) can do to help him improve. 

He definitely has not been himself the last few days, and I hope he is not coming down with something, but if he is at all not in tip top shape for this I will reschedule.

On to better news..he still LOVES school and fights to stay awake for the entire 3 hours (except today...not a good day, like I said, not himself). He is looking at me, Mom, yes, me, more, and always touching my face and shoving his hand in my mouth as his way of connecting with me, which I love, especially when he has whip cream on his hands  :)

And twice he has responded to me when I said "where's mommy?"...looking at me and tapping my shoulder. That is huge! He has been smiling at me and John more, and he even greeted me with a wave and a smile when he awoke the other morning, and I swear he said "hi" then and again from across the room a little while later...maybe it's my imagination but I will give him the credit anyway. I see him look at Dad and wave to him, but it's nice that he finally gives mom a little respect- I thought this wouldn't be a problem until he was a teenager!

We visited with some friends last weekend in Kennebunkport, which was so beautiful and peaceful...I would never leave their porch if I didn't have to, what an amazing view of a little harbor in the back yard. Anyway, our friend's miniature poodle claimed Harrison immediately, jumping into the car as soon as I got out, and into the back to say hello. He barely left Harry's side, laying across him while I was trying to change him on the floor, and sitting up next to him while he napped on the bed, and even snarling at us if we tried to pick him up...I told him though, I said "NO" and he jumped up and left when I told him to, he knew I meant business.

Another friend brought her 12 year old son and his friend, and they couldn't leave Harry alone either, playing with him, talking to him, helping to feed him through his gtube, even constantly checking on him while he napped. They were so interested and attached right away...it was really beautiful to watch.

All in all a great day.

That kid sure makes a lot of friends for not saying a word. Hmmm, maybe that is the key.

Oh Brother...

I may have mentioned, I have always truly believed that Harrison's natural twin is his yellow lab, Cannon. They are both blond, full of love, laid back, take it as it comes, stoic kind of guys, and they are both more expressive than anyone I know who actually uses words. They also, bless them, both have had crazy medical issues since they were babies.

Cannon had his right knee replaced before he was a year old (his sister too but she was older), and he has been hospitalized more than once for dehydration from out of control vomiting. He has had some of the same tests as Harry, and they even tried to put him on one of the same meds, which we flat out refused because of the reaction Harrison had to it.

Cannon's knee has never healed correctly, and we have had to take him off of the anti-inflammatory meds because of his belly (Irritable Bowel???). Today we finally followed up with the surgeon who replaced his knee three years ago, and he feels that Cannon is doing even worse than the dogs who don't do well after this surgery. He falls, as he says "outside the box." What a surprise. Just as complicated as his baby brother. 

Hopefully this will be an easy fix...take out the metal plate that he no longer needs, because there is probably a chronic low- grade infection there from the metal, and give him antibiotics. Also,  cortisone-type shot in both knees, once a month for 3 months.  A mild anti-inflammatory that hopefully won't upset his stomach...and then we move on to the left knee, which has much worse arthritis and will probably also need to be replaced, but with a different procedure considering how he has reacted to the first one.  Poor baby...

How did our boys get to be so complicated????? They are both damn lucky they are so cute and lovable!!!

Harrison, by the way...doing great, loving being back in school for the summer, and scheduled for a 2nd sleep study on July 31. I'll keep you posted....

Wave Knocks Him Down, and He Gets Up Again...

We finally, FINALLY, heard back from Harrison's doctor about the sleep study. And, we can do it again. Apparently the equipment the sleep technicians use is more sensitive than the regular O2 monitors that we use at home and in the hospital room, and of course they pick up more information. Which makes me question why they don't use the same equipment in the hospital room, and at home for that matter...I will never understand the health care industry and how our health can be so secondary to their paychecks...

Anyway, Harrison's O2 dropped a couple of times (which NEVER happens at home unless he is sick...and like I said, he was on the second day of a cold, and if they had done this study 3 days earlier when it was originally scheduled then this probably would not have been an issue, and if he does need a little oxygen support we give it to him, trach or no trach...) and the doctor is not ready to remove the trach. He was very agreeable to schedule another sleep study, and I am waiting to hear from the sleep lab with a date. 

By the way, our doc was EXTREMELY angry that the sleep lab passed Harrison off to the inpatient floor...he agrees that this could have been done very easily in the sleep lab and if Harrison runs into trouble, all we would have to do is take the cap off of the trach... so hopefully he will get us into the regular sleep lab for this next try.  We have until October to remove the trach, so there is some time to play with.

A Little Choppy

Harrison's sleep study was OK. Not perfect. Really, who wants to have a couple dozen little metal tags air-glued to their head, face, arms, and legs, and then have little tiny pieces of paper with CO2 sensors on them tickling their nostrils, on a good day??? With a new cold, including coughing congestion and runny nose, and little means of communication to really understand what is going on...not a happy boy. But he did finally fall asleep at 9:15 and slept great until 3 am. Then the coughing started, some suctioning needed, and he kept coughing off that cap on his trach. As un-gentle as the tech was applying the EEG leads, he was actually very good at helping Harrison calm down during the hour and a half that he was awake and very congested and restless. And a little Tylenol helped too  :)

He finally fell asleep again around 4:30 until 5:30 and then they just ended the test since there was only a half hour to go and Harry was wide awake anyway. I did ask the sleep tech if there was room for comments on the data form, and he said yes, and agreed that he would indeed note that every time the cap came off the trach it was because Harry blew it off himself, NOT because we had to take it off to help him actually breathe. Hopefully the suctioning incidents won't work against him...my feeling is, if the trach was not in there then all that nasty stuff would not get caught on it and he would just cough it up out of his mouth like the rest of us...

Results in a couple of days...I'll post when I know more.

Meanwhile, special THANK YOU to our dear friend Rabbi Susan who stuck around the hospital until 6:30 pm on a Friday night to see us, wish us luck, and bring us our challah! Since Mom did not fall asleep until 4:30 am, and only for 30 minutes or so, that challah was truly blessed bread, getting me through the night!

Hey Where Did That Wave Go?

OY VEY!

Children's Hospital is so predictable. I got a call at 3:15 pm that there are no beds available for Harrison tonight and we need to reschedule. (By the way, I have complete empathy for those families sitting in the ER right now hoping and praying for a bed on this amazing unit, and I am more than happy to give one up to one of them when our procedure is, after all, elective, important as it is). After I simply would not accept a date after next week they all of a sudden found a spot for him this Friday...so that's where we are.

As for all the changes in time and location of the original study, it seems that the reason they are "not comfortable" with Harrison in the Sleep Lab is that they prefer he have the bedside nursing, which is not available in the Sleep Lab. Ok, that's fine and makes sense...I just wish I didn't always have to pull teeth from 5 or 6 different people to get the whole story.  I swear, the communication from that hospital both to families and among doctors, nurses, and every other staff member there is as dreadful as their Marketing Team is exceptional...(interpret that as you wish)

Big Wave Coming

Tonight is a big night for us. John will bring Harrison and me to Children's Hospital for our big sleepover tonight. They are doing a capped sleep study on Harrison, which means that they need to monitor his breathing while the trach is capped, overnight. Easy, right? It should be, he has had the cap on his trach all day and all night for weeks now. Of course not. It is a whole procedure...EEG leads all over the place, and a nasal canula under his nose to monitor his breathing output, to make sure he does not have sleep apnea (oh we hope not!)  Poor guy...I just hope he can get some sleep. This is Step 1 toward losing the trach...good vibes, everyone, PLEASE!!!

In typical fashion, what we thought would be a simple procedure, easy in and out of Boston (ha! that's a good one!) has at the last minute become just a little more complicated. We had planned for a typical sleep study, in the Sleep Lab, going in at 7:30 pm, with a nice bed for mom to sleep in next to Harry, and leaving at 6 or 6:30 am tomorrow morning. Friday, the Sleep Lab docs reviewed his chart and decided they were "more comfortable" with Harrison being admitted as an inpatient, on the ICP (Intermediate Care Program, where he practically grew up)...in other words, they are afraid of him.  Yesterday, the day before the study, is when I got the phone call to learn about these changes. OK, I have just written and deleted two opinions about this...anyway...This calls for a 4:30 pm admission- sorry, that's not going to happen this late in the game. I talked them into letting us come in at 6:30- and a noon discharge tomorrow- ugh. Oh, and mom gets to sleep on a little mattress on the window sill. NICE! Really, THAT should be my biggest worry!

So...(oh gosh now I sound like all the docs and nurses there, they start every sentence with "So..." That is SO annoying)...tonight is a big night. We want proof that Harrison will be able to breathe safely and efficiently without using the trach, just his mouth and nose like the rest of us.  If this is a good night, we will move on to Step 2, to be discussed when the time is right of course. If you know me at all, you know that even talking about this before it happens is huge...but I am determined to stop being ruled by jinxes!

Wish us luck!

Just Keep Swimming, Just Keep Swimming...

We are still THRILLED with preschool, let me just say!

Harrison really is just swimming along, at his own pace of course, but making progress with every little stroke.

We met with his teachers and therapists this week, and not only did they all have great things to say about how hard he is working and how far he has come in just a few months, but, most importantly, they all agree that this integrated classroom in our local public school is, yes, the right placement for him. WHEW!!! I almost cried. I never know- I know he LOVES being there, loves his friends and all of the people who work with him, loves feeling like a regular kid...still, I always wonder, is he getting enough? I actually think he is- the staff there are absolutely amazing, so impressive, and we feel so lucky to live in this town. And the social piece I really believe is probably boosting his progress, because he is so happy and he thrives on the attention from his classmates- that would make any of us more motivated, yes?

So, take it one year at a time, right? If I think too far ahead...well, I just won't. We want him to be in the place that is best for him, and we hope it where he is now. Lucky for him, his dad happens to be an expert in the field of special education and has good connections, and he will make sure Harrison is getting the very best. (check out www.amegoinc.org  and also www.bestclinicalnetwork.com)

I went to John's school to take pictures for some marketing and pr material, and I'll be honest, it was difficult to be there this time. I don't know how he does it. I know I couldn't. I used to love working with kids and adults with special needs. Not interested anymore. His clients are lucky to have him on their side.

Impressive Act of the Day

Harrison is sooooo ready to get rid of this trach. For those of you who don't know, Harrison's trach has been "capped" during the day pretty much since he started preschool, with the exception of 2 weeks fighting a cold. This means he is not using it to breathe, so he is getting used to breathing the old fashioned way. Good practice. And harder than for the rest of us, since he has to physically push the air around the trach tube and over his vocal chords. Anyway, he makes A LOT of noise all the time, loves the sound of his voice (he was pissed when he first got the trach and realized he was silenced...like Ariel!) and he experiments with his voice all the time. So lately, he has been holding his breath, very deliberately. For a split second I wondered if I should be concerned, and then I realized, there is a method to his madness. He is, in fact, taking deep breaths and holding them (picture getting ready to dive to the bottom of the pool) to gear up for some major noise. He does it two or three times, and then he starts talking, singing, whatever, and he does not shut up! Pretty smart, huh? And apologies to those of you who have been victims of his very loud, ongoing interruptions when you are trying to talk (Rabbi, John and I enjoyed your seder, we were listening!)

Harrison and Roger Ebert

I tried to share Roger Ebert's blog post here but could only post the link below

http://blogs.suntimes.com/ebert/2011/05/the_way_to_a_mans_heart_is_thr.html

I did not know this about Roger Ebert, that he has a G-tube for 100% of his nutrition since he recovered from his illness. I am grateful that he has shared it and shown the masses that it is really not that bad (contrary to how I felt when I learned we would be dealing with this when Harrison was less than 2 months old...ick!). We actually have not run into too many people staring when we feed Harrison in public, but I did wonder at first what people might be thinking. Now I could honestly care less what they think about that or the trach, and actually anyone who has commented or questioned has done so in the most sincere and polite way possible, which has made it very comfortable to explain or talk about. Thank you, kind strangers out there.

Speaking of Harrison's feeding issues, we have recently tweaked his diet some because he has not gained weight in a long time, and actually has lost some since we started adding baby food to his formula (which replaced some of the formula to keep the volume consistent). So now he is getting more than he was, plus a new formula (different type of Pediasure) with extra calories. Personally I think he is not gaining because he has been working so hard physically and making so much progress, and he is just burning calories faster. He has gotten much taller, and leaner, thus much bulkier for mommy to carry around everywhere, especially since he is dead weight. I'm all for helping him gain weight, but I really hope he starts walking soon!  In time, I guess...I know it will happen. Goodness knows he is trying.

He is also getting much better at learning how to eat...using his mouth! He enjoys lots of flavors and textures, and he is getting better at using his tongue to taste and move things around in his mouth, and swallowing little bits, and even starting to play with food and actually bring his messy hand to his mouth! I know, big deal, right...but in this house, these things are HUGE!!! Luckily for Harrison, the G-tube was placed for reasons that no longer are a factor in his health, and our goal is to get rid of it one day.

What has been incredibly fascinating through all of his developmental progress is the new respect I have for biological function, and the micro- steps that are involved in every move we make, of which we are not even aware. It is incredibly amazing to recognize and to watch human development play out in super-slow motion! I will probably come back to this revelation often...

Floating Comfortably, Dare I Say?

Harrison is in preschool! Really, truly in preschool! Our local public school in an integrated classroom, with absolutely amazing teachers and wonderful therapists- we are soooooo lucky to be in this town!  So lucky!  He is so happy being with regular kids in the controlled chaos of a normal classroom. We can only hope that he can continue here, stay in town, keep making friends in the neighborhood, feel like a part of the community. I truly believe this will help him thrive and reach his potential, exceed it even. Since the day we visited he has been bombarded with new friends, two in particular who always vie for his attention and the privilege of being his helper. Wow! They love him, they all want to be his friend, and all they see is a cute kid who needs some extra help to be a part of the class, and they have welcomed him so enthusiastically. All the moms in the class say the same thing..."All he/she talks about is Harrison, Harrison, Harrison!" That feels so incredibly good.

He got to start right after his 3rd birthday instead of waiting until the Fall, so that he would not lose time with his services (physical therapy, occupational therapy, speech therapy). For now he goes to school with a nurse...not forever though. We have lost some nursing hours (thank you Mass Health) and one of his nurses took another job so we will have to find someone else for the Summer and next Fall, but other than that, life feels a little more relaxed. It is the first time he is in an environment where I trust that everyone involved in his care actually knows what they are doing! What a nice change from constant battles with the hospital, nursing agencies, insurance, and medical supply company.

So here we are. Harrison continues to make slow but steady and forward progress with everything that we take for granted. As a friend of a child with autism said to me, we see progress a lot differently than most people do. A smile, eye contact, playing with food, playing with voice, playing with anything...each is such a huge step for us, but he is the hardest worker I know and I have the utmost confidence he will keep going, and going, and going...

A Long Time Coming

Harrison is 3 now, and I have been pretty good about documenting our experiences since this tidal wave began. I have filled almost three journals of facts, feelings, and opinions, I have sent out update emails, and I have posted bits and pieces on Facebook, and now this seems to be a good next step, a way to express my thoughts in a stream of consciousness type of style.

OK, so how do I begin this new phase of writing? 
I guess I just did...