TRULY THANKSGIVING

Oh so much to be thankful for this year. 

Since Harrison's trach tube was removed, he has made remarkable progress, physically, cognitively...he participates in and enjoys life so much more than he already did. And we are so very thankful for these things as well as the incredible support we get every day from our dear family and friends.

We spent a wonderful Thanksgiving with our New England family, and we missed being with the Baltimore family...hopefully next year we will all be together.

Harrison continues to ride his wonderful horse Karina, even in the cold weather. She is an Icelandic, so she loves it. Unfortunately there is no indoor ring at this barn, but Harrison has his long johns and is ready to ride! And when we win the lottery, this barn will have it's indoor ring if it has not been blessed with the necessary funds by that point. That is a PROMISE.

About this time last year we were considering putting Harrison on a special diet to control his seizures. We postponed it because it is a big change, he would have to be hospitalized for 2 days (to gradually adjust to the diet and be closely monitored), and he had just started a new med that seemed to be working very well. In fact, it continued to work well for him for a good 6 months at least. His seizures have now unfortunately increased in both frequency and intensity. We met a new doc at MGH (Mass General Hospital) yesterday, whom we liked very much, and we have decided it is time. The diet is called a Ketogenic Diet and is actually pretty easy for kids who are fed through a g-tube, because there is a formula already mixed to provide the appropriate nutrition. Kids are typically on it for 2 years once they are seizure free, although they can remain on it indefinitely from what we understand. He can still practice eating certain foods by mouth, including foods he already loves, like Greek yogurt, hard boiled eggs, and yummy salty bacon, so he will not miss out on the tastes and textures he enjoys. We meet again with the doctor, and the nutritionist, in early January...I'll keep you posted. Wish him luck! 

Hurricanes and Halloween

This child's social life is picking up quite nicely! Harrison has had a full calendar with the start of school...parties, theater, field trips. I remember when I had a social life!

We went to a friend's birthday party and Harrison, as usual, found one sucker to hold him on her lap all night while he happily watched everyone enjoying themselves around the house. He was a little annoyed when it was time to leave, but he did give out a lot of good waves goodbye.

He also got to go on a date with his babysitter and 4 of her friends, all med students and all fascinated by this medically complex child who immediately had them wrapped around his finger! They had all sorts of questions for her, about his condition, his feeding, his seizures, his development...and he is more than happy to be a teaching tool if he is going to get this much attention, especially from the guy who discovered Harrison's love of spinning in circles! His babysitter had asked me if I would like to "take the day off" so she could take Harrison apple picking and out to lunch and, gosh, I was so excited I couldn't wait for her to pick him up! Of course he had a wonderful time and was completely pooped by the time he came home SEVEN hours later!!!

Last weekend we went to a community production of Alice in Wonderland to see some of our friends in the show. They did an amazing job, and Harrison cooed and clapped his hands throughout the whole first act until he passed out. He loved the singing and dancing and he applauded at all the right times. Harrison absolutely loves live music...he was completely taken with our neighbor who brought out his guitar at our block party, and he is in love with his new music therapist who comes to the house once a month. So I know he will enjoy the next show we are going to see, Beauty and the Beast at the high school, starring our good friend in 3rd grade as Chip!

Harry still loves riding his horse Karina, too, and he sits up straighter and taller each week. With progress in development comes more toddler-like behaviors, which I just can't seem to complain about. He is a stinker, for sure...last week his regular instructor, who he adores, was running late, so the other instructor, who has worked with him a handful of times, took over. Also, a different volunteer took over to lead the horse. Well, he was just not interested in this. He cried and cried, even once he was up in the saddle, and when he finally calmed down and was smiling he actually refused to sit up!

 Then when his regular instructor finally arrived, I showed her this picture and she said "He was lying down?" I guess he heard her, because he laughed and lay down again, to show her how bad he was being!

Medically, Harrison has been very healthy except for a little cold in the beginning of the school year...until now. He has had a terrible cough/cold/fever all week, and unfortunately he will miss the Halloween festivities. Which means Mom and Dad won't have to help him eat all his candy. Bummer for us! He will put on his costume for pictures when he is feeling better, and I will post them of course.

His seizures have also gotten a little worse, and we are again contemplating changing his diet. We have an appointment with a new doctor next month...we'll see what that brings.

We hope all of our friends and family and their friends and family are safe and did not suffer too much damage from Hurricane Sandy. We feel extremely lucky, and I think about this every time I watch the news. We recently got a generator, and to our relief discovered that it works! Very lucky, since Harrison was just starting to get sick and, let's just say he has needed a lot of attention requiring electrical outlets. We also did not have any damage here, but for a few trees down in front of some houses on our street. I am still in disbelief of all the incredible flooding along the east coast and the snow in the mountains, and I am thankful that we were not effected. My heart goes out to everyone who has been.

Good Busy

Time definitely does fly when you're having fun...or at least when things are as they should be.
We actually had a great summer! 

Harrison had lots of vacation from his family and got to spend some quality time with his girls...the wonderful nurses and babysitters who have become welcome fixtures in our home...while we so graciously got outta town throughout the summer to give him, Cannon, and Ruby the run of the house. Yeah, we're thoughtful like that. We also made sure that while we were all here together, we had a good time. He was so busy walking the dogs and riding his horse and visiting family in Baltimore that he just did not make time for even a sniffle! (He has a little cold now of course, but that comes with the start of a new school year, I have learned). 

Harry and Mom took a road trip to Charm City in August to visit MomMom and PopPop, and he also got to see his Aunt Carol and wish cousins Lauren and Mitch love and happiness for their September wedding. 

He did great in the car both ways, especially when we could take a break to stretch our legs and he could stand by the car with no help from Mom!

Harrison has been thrilled to return to a full week of school- his third and final year in preschool. He is still in the morning class with the same amazing teachers. Even better, with the trach he out he no longer needs to have a nurse with him in the classroom. It is sooo much better for everyone! He has more consistency, and it is a wonderful symbol of the progress he has made. The school has hired an aid for Harrison who is really great - what a relief!

Harrison continues to ride his horse Karina every Thursday, and every week he truly gets stronger. Everyone has noticed he is more alert, makes better eye contact, and in general seems more present. He and Karina love each other so much, it is clear, and it is still the highlight of our week.

Whew! What an exciting, exhausting summer!

Summer Fun 2012

It's a good summer.

Having the trach tube removed has been the best thing...Harrison really feels like a regular kid, doing everything his friends are doing and feeling so proud.

It has been relaxing, with lots of car rides with mom and dad to run errands, go get ice cream, visit with friends, and just hanging out with us while all 3 of us do our ab workouts! And it has been busy, with summer school and our new favorite activity, horseback riding.

As always, Harry LOVES school. He is in a summer program on T-W-Th from 9-12 for 5 weeks. He has some different therapists who all bring new perspectives and approaches, and a teacher who successfully pesters him every morning to wake up from his post-breaksfast nap! If he does sleep through something, she makes sure he completes it later.  Spending more time on the playground gives him many more opportunities to be stronger and interact with his friends. He comes home almost every day with a super piece of artwork, and I just wish he could tell me with words about how much he is participating in everything the class does (at least I can hear it from the teacher and nurses!) They all tell me how much stronger he is, how much better his eye contact is, and how much more a part of the group he is in general- it's a wonderful thing to hear!

And horseback riding...wow! We are truly amazed! The therapists are so good with him, and he and his horse Karina fell in love instantly. In just a handful of weekly 45-minute sessions he has gotten so much stronger, is sitting up straighter, pulling himself up faster when he starts to lean forward...I think we have a barn rat on our hands! This barn in particular, in Hopkinton, I highly recommend for therapeutic riding. http://equinepartnersonline.com/

A quick medical update: We have known that Harrison has a compromised immune system, which is why he was getting pneumonia so often. He has been much healthier since we started giving him a daily prophylactic dose of azithromycin (that miracle z-pac we all know and love!). As we expected, his health has improved even more since the trach tube was removed (yay!) His bloodwork, however, does not show as much improvement, so he has begun monthly IVIG infusions.

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

He had his first infusion in July and, as anticipated, he had a bit of a rough time over the few days following. He will get another infusion next week, and the good news is he can get it at home with a visiting nurse! If it is administered a little more slowly (the first one was over 2 hours) the side effects may be lessened somewhat...we'll see. He will get repeat bloodwork in the Fall to see if there has been any improvement.

You will all be invited to Harry's first equestrian show, so stay tuned!

Basking in Freedom

It is still AWESOME to have that trach tube out! Eyes still open in the morning with a big smile...for all of us...when we realize it is really for real. Harrison is learning quickly how to cough (crash course with double pneumonia...more on that in a sec) and even that makes him smile!

And yes, I did say double pneumonia...inevitable of course, and probably worse just by the fact that the trach is gone, we cannot suction it to help him clear all those secretions, and he is just learning how to cough it all up out of his mouth (yum). A few nights in the hospital and a few more sleepy days at home and he is back to 100%. Happy within a day of those IV antibiotics...as long as he's got his godmother to cuddle...

And happier still, a week later, with his... god-sister? My god-daughter, his god-mother's daughter...yes, god-sister!

He had a wonderful time with their whole family over Memorial Day, at a peaceful lake in CT, where he was the most popular kid at the party. All of these people whom I barely knew were fighting over who gets to watch him, and that just made my heart feel so big and warm! I am very lucky to have some good people in my life, who are nice enough to share their friends, more good people.

Unfortunately John was not able to join us. We missed him, but it gave me the oppotunity to do something I have looked forward to since Harrison came home...just plop him into the car and drive.  Just me and him. No chaperones needed in the back seat with him. I think John is excited for me to be busy so he gets his turn!  Once we joined everyone, I could leave Harrison with anyone there who was willing so that I could ride in the paddle-boat, run up to the house to make his lunch, whatever...easy. Wonderful! Relaxing. I'm still relaxed...

Happy Mother's Day!

Happy Mother's Day!

We are 3 weeks with no trach, no suction machine, stress-free baths, rash-free neck, and FREEDOM! Harrison is doing amazing and he is so happy, and he still wakes up with a smile when he realizes it is not a dream. And that goes for mom and dad too! 

Life is still stressful, of course, and frustrating, but it doesn't seem to matter...rather, it is easier to get over those stressful and frustrating things, because my mind eventually comes back to our new life. Every time I look at Harrison's neck I linger. It is just so cool!

We saw the doctor and he said the hole is 90-95% closed, and since then it seems to have closed even more. It should close completely on its own, but if we have to in 6 months we will have it stitched up, very minor. For now, it looks like he has an extra belly button... on his throat- how cool is that?!

Day 3

We are home!

Happy, healthy, and home.

Bye Bye trach! Adios!

Day 2

Harrison had a great first night post-op, aka post-trach! He has been so happy all day, and I have taken lots of pictures, including one of the back of his neck, which will always be my favorite spot, I just keep staring at it and running my finger across it...it's so beautiful! We left the ICU and moved to a regular floor today. He got another visit from his babysitter Maddy, who came by yesterday too, and he loved that. He also got a visit from one of his old ICP buddies Ethan, who is now a surgical nurse and engaged to his other favorite ICP nurse Sarah...guess he has some competition! We love them both and are so excited for them! And another visitor, my friend Beth who is one of his pseudo-aunties. He is so loved and quite popular. We have gotten the most amazing support from our friends and family...his entire community of people in his life are all celebrating with us, and it feels incredible. We are blessed. 

I felt a little guilty today, this morning, being on the ICU and feeling so happy, when the other kids there are so sick. One of Harrison's friends from his play group program at Perkins School is also here, on the ICU. He's pretty sick. I talked with his mom for a few minutes, and, bless her, she is so genuinely excited for us, despite the very difficult time they are in right now. We wish that boy a very speedy recovery and lots of good progress. 

Every time I look at Harrison I still can't believe it...I feel like we are finally like everyone else. Now I just have a regular kid with delays (and a gtube!). That trach being gone makes such a difference, even though it was fairly inconspicuous and he barely used it. Yesterday morning as we drove into Boston through the pouring rain John pointed out that rain is the sign of a new beginning. He's right. I feel like the next chapter of our lives has begun, and I feel so much more hopeful for Harrison and all of us. His progress is going to soar, I can feel it. I realized something today. I am so ecstatic, and our friends and family are all so full of joy and pride and love for us, and I realized, I feel like I gave birth yesterday! That's what it feels like. Four years later...ahhh, so this is how it is. Pretty cool. Let's look forward to many good and wonderful things.

Oasis

How do I begin? This has been one of the very best, most settling days of my life. We have literally brought closure to a very intense 44 months...today Harrison's trach was removed! We are still processing it. I am still in disbelief...but there it is, that little dressing over the hole, which will hopefully close on its own within days. And Harrison is happy, and relaxed, and relieved, as are we. We scheduled this day about a month ago, and we did not tell anyone...too much disappointment last Fall, I couldn't jinx it (my Jewish superstitions take over again). We arrived at the hospital at 6am this morning. He was in the OR by 7:30 for a bronchoscopy and laryngoscopy (in other words, a little looksy into his airways) while under anesthesia, and by the time I went to the ladies room and John and I played a few rounds of Words, the doc was finished and filling us in. Everything looked great, everyone's happy, let's get to the ICU and when he wakes up we'll take out the trach. And that's what happened. Simple as that. Uneventful, just like we like it. He has been smiling, cheerful, happy all day. I keep staring at his throat, it's so surreal. I can't stop running my fingers across the back of his neck. He knew it was a big day. He woke up at 4:30 singing and laughing, wide awake and ready to get going! He is amazing! And everyone's excitement and enthusiasm and support has been incredible! He is getting bigger, stronger, healthier, making huge developmental progress...it's all good!

Addendum...

Wow! My friends' comments on the post below are amazing, and make me feel really good- good about myself, and warm toward the special people I have had the privilege of getting to know. Thank you.

After I wrote that, I was thinking that by no means do I want to discount what most parents do for their children, and I know every single one feels like they must master a juggling act, whether for one child or, bless you, 2, or 3, or 4 (you know who you are!) All of us work hard, we just have different jobs. I don't assume I have it harder than anyone else, but I do definitely have different experiences and different fears and waaaay more medical knowledge than I care to. And that Master's degree I got in Child Development...that is out the window, because I seriously have lost all track of what's typical! Oh well.

I cannot imagine taking care of more than one (although I can't forget about our dogs, seriously sometimes they are more work than Harrison) and I don't know how you all do it! You all impress me every day, and I get a kick out of watching my friends with their kids, typical and otherwise. I enjoy it so much, and I think it makes me a better parent when I break out of my own little bubble. Again, thank you.

A Day in the Life

The article I posted by Maria Lin really hit home, and I still think about it every day. What a relief, like a weight off of my shoulders, to have my thoughts so eloquently put into words....I am grateful to her and feel like I am in good company with her.

The one point she made that I can't get off of my mind is the first one...I'm Tired. As she writes, it's not necessarily from lack of sleep. It's physically, from carrying around 32 pounds of love, from being hunched over to support him while he walks or stands, from constantly repositioning him so he doesn't slide out of a chair or simply topple over, from feeling like an octopus while I hold him, hold his feeding tube, pick up the drool rag that fell on the floor, and suction his trach all at once- what I am particularly proud of is my ability to suction his trach while I am at a stop light! It's feeling like we are caring for a newborn who is four years old.

Anyway, I'm not complaining at all, and I am not looking for praise- you would do the same.  Each of you has your own nonsense to deal with every day, I know (and I love hearing about it, it's a nice break from my own nonsense!) I've gotten into the rhythm of things. I am just grateful that someone could give me the courage to stop pretending it's all fun and games. 

Also, it is emotionally tiring. It's easy to celebrate the small victories inside our house...it's not so easy to see them in a classroom full of typical kids.  I really hate when I have to go to school because one of the nurses who accompanies him is not available. I lose my break, my grocery trip, my dog walk, my gym time. And I get really depressed when we go to school and he just sleeps. I know it must mean he needs it, but in my mind he is wasting precious work time, and he has a lot of catching up to do. Nothing I don't know, just a reminder I don't need. It's funny though, as soon as he opens his eyes and starts working, my whole mood changes, does a 180. When he is up, I am up. When he is down, I am down. And people thought I was easy to read BEFORE!

And when the kids get excited for him, "Look, he's standing!", "I'll help him pick a library book today!", "I brought a toy for Harrison to play with!", "Can I be Harrison's helper today?" That, truly, is amazing and wonderful and heartwarming. That seems to snap me out of my funk and brighten my day again immediately. And don't for a minute think Harrison doesn't relish that attention, especially from the little girls in his class...he's a smart cookie, and he knows it.

Covering Some Distance

I feel like so much has happened since Harrison's 4th birthday...all good, and enough little steps forward that dare I say we are making some progress in this house?

Mr. Popular has been to 2 gym birthday parties this month. At the first one he was part of all of the group games and activities, loving the music and moving around, especially Freeze Dancing- he cracked up every time the music stopped, and he loved the sudden running and stopping and falling to the floor and jumping up again. I have never seen him have this much fun, ever!! He had just as much fun as the rest of the kids, and it was the greatest thing to watch.

At the second party, two of his best buddies (one was the birthday boy), who are themselves attached at the hip, were so happy to see him that they separated and made room for him between them in the beginning circle! And the birthday boy stopped in his tracks every time he ran past Harrison to give him a hug and a kiss for being there. I cannot describe the feelings of love and pride and acceptance that made me feel, for both of us. Those boys' moms may say they are trouble, but I will take them any day and if they can get my kid to actually get into trouble...bless their hearts! (Will I be sorry I said that?)

I posted a picture on Facebook which I will repost here, because the video that follows was taken two days later by Harrison's nurse (the one who can get him to do ANYTHING- I guess that's a "normal" thing too, right, that they perform for everyone but Mom?)

I took this picture of him holding a pretzel rod and swiping it across his lips...take a look at that and then the video- more reason for me to burst with pride!

Harrison is doing a lot more talking and communicating as well. In fact, this same nurse reports that before he actually ate that pretzel, he was in the other room playing and signed "more," then made his attempt to sign "hungry" and then put his fingers to his mouth that he wanted to "eat."  SERIOUSLY??? Hey, we'll take it! I give him credit for everything, I know how hard he is working!

His eye contact has improved, his gaze at objects to indicate choices, and he has been experimenting with his voice and his mouth nonstop, really talking as best he can. We walked by our neighbor's house the other day and he turned his head all the way toward it, did that little first wave thing with the fingers facing his own face, and definitely vocalized something that sounded like "hi!"

I know I am bragging...I hope that's ok. Well, for me it's bragging.

I also posted on Facebook an article that was the most meaningful piece of writing I have seen since this all began. I responded to the writer, on the page, and this experience of reading and responding took a HUGE burden from my shoulders. I hope you will go to the address below and read.

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html?ref=fb&src=sp&comm_ref=false

It's the first time I remember ever having a Spring in New England...new life and growth all around! Ahhhhhhhhhhhhhhh...........

Happy 4th Birthday!!!!

Well, luckily the vacation was healthy...once we got home, Harrison started dragging and what I was pretty sure were allergies turned into pneumonia...AGAIN. UGH. He slept through half of his birthday party, but his friends had fun and he was absolutely thrilled to wake up to see everyone there! As a true product of his parents, he woke up just in time for cake and ice cream! 

By Sunday, his birthday (4 years old!) he was down for the count...no idea how long he will be out of school, but he was pretty crafty with his timing- see his reaction when Dad announced he would not be going to school on Monday!

Road Trip!

Harrison had quite an adventure over February vacation! The three of us drove to Baltimore to visit friends and family and to celebrate Harrison's cousin Lauren's engagement to her firefighter Mitch! We are so thrilled for both of them!!!

The drive down was loooong, but we finally got to Baltimore late Friday night and we all slept very well. Saturday was an absolutely gorgeous day (loving this tropical winter the east coast is having!) and we went to the Baltimore Zoo. It has changed a lot, but at least the big lion statues are still there!

Saturday night was the big party, which was wonderful- Lauren and Mitch had a great time and we are all so excited for their Big Day in September!!

While we were at the party, Harrison played with my high school friend Kathy, her husband Mark, and their three adorable, very sweet kids. He had a blast, of course!

Sunday we spent at Lauren and Mitch's with a few of their friends, opening gifts and eating leftovers...mmmmm! We spent the day Monday with Aunt Carol, who got Harrison some awesome musical instruments, which he LOVES!!!!  Thank you Aunt Carol!

Tuesday we had breakfast in my old hood, Canton, with Harry's new friend Ellen and one of his favorites, Auntie Andrea...he was in HEAVEN, he is still Hef's #1 protegee!

We had a fairly easy ride back home, stopping to see Auntie Diane, Mal, Jared, and Uncle Jason in Greenwich. Harrison's favorite part of the ride was definitely the rest stops where he could get out and stretch his legs!

Here's to many more fun road trips together!!!

Hang Ten

Happy New Year! Knock wood, so far it has been...

We had such a long time to wait for Harrison's appointment with the new neurologist that I begged his regular neurologist for something to hold him over in the meantime, and this new medication seems to be doing the trick, so well in fact that when we did meet with the new doctor, we all agreed to hold off on the special diet. 

As in the past, as the seizures subside, Harrison is able to make some great progress developmentally. Nothing remarkable, just little baby steps and a little more consistency with his skills. Better eye contact, more waving hello and goodbye, clapping and singing along with his classmates, even when he hears them from the other room! Grasping things and not letting go, turning toward voices of his favorite people, more controlled steps with his walker and some support, petting the dogs, trying to give kisses, chewing and biting and swallowing so many kinds of foods, scooting himself forward- usually while he is laying on his bed, to the point where he is half hanging off the edge and then makes enough noise to get our attention and laugh when we come running in, "you better get me before I fall!"  He's ok, that kid.

Mom and Dad had a wonderful break to Sanibel Island, and Harry and Cannon and Ruby stayed home with nurses and babysitters. And this past weekend he had a great visit from his Pop Pop and Esta, and he was so happy to just nuzzle and cuddle and sing with them!

He still loves school, and he very clearly prefers his friends over grownups when it comes to playing with toys or getting some help.

We are so so sad (devastated!) that his physical therapist at school is retiring...he has made incredible progress working with her, and he just adores her- he gets so excited when he hears her voice and knows it's time to play with her! He will miss her terribly, but I am sure we will see her since she lives close by. Thank you for everything, Mrs. S!