Kiddo Update and Pics

It's been a while since I updated everyone on how Kiddo is doing healthwise (for a bit of background, start with this post).  Things are actually going very well on that front!  His last endoscopy showed that he isn't allergic to bison so that was a great thing.  It means he can continue to eat bison burgers, roasts, steaks, etc. and that makes him VERY happy.  (As a reminder, the only other meat he could eat prior to this was shellfish, and they get boring very quickly when you are also a picky eater.)  Because of the latest test results the doctors think that his allergy to beef MAY have been a false positive.  So we are currently nearing the end of a three month trial of beef that appears to be going well.  Kiddo will have another endoscopy in May to determine if beef can stay in his diet or if he'll have to give it up.  To be honest, other than from a convenience and cost standpoint (beef is much cheaper and easier to get than bison), none of us really care if beef can stay or not - if it has to go, Kiddo can continue to eat bison and it is so incredibly similar to beef that he's good with it either way.

In hockey news, Kiddo's team didn't do so hot in their regular season but they came in 2nd place in a recent weekend tournament - woohoo!  Below are some pics from that weekend.  Kiddo is #9.

We recently went to see The High Kings, a completely fabulous Irish quartet.  We saw them a few years ago and we all love their music.  Here's Kiddo with the guys:

And here he is holding The High Kings guitar pick that the guys all signed for him. How cool is that?!  Of course Hubby and I couldn't find anyone handy to take our picture so we relied on his long arms to do the trick, hence the odd angle of the photo. :)

Oh, and I'm getting ready for BEA/BBC in New York in May and I'm still looking for a few more roommates so if you're planning to go and need a place to stay PLEASE GET IN TOUCH ASAP!!!

There are other things going on, and of course I have some book reviews, but this is what's on my mind right now. :)

I'm back! Well, sort of ...

Hello blogging friends ... have you missed me? I've sure missed you! I've been keeping up with some of your posts, doing the best I could, but I know I've missed a lot.

I'm trying to get back to posting semi-regularly but I think my blog will be quite different than it was before.  More on that in the coming weeks, as I try to work out a new routine.

For now I wanted to give you a few updates on what's been going on around here. I also want some input from you, so check out the very end of this post to see what I'm asking.


On the work situation

My husband and I are currently trying to see if we can live on just his salary since I got laid off.  Things are tight but they are good.  We've got some pretty exciting plans (I'm not ready to post them on the internet just yet) in the works though, and I'm really happy about the way things could be going for us.


On Kiddo's health

Over the past few months Kiddo has been doing a trial of bison meat (the only other meat that is safe so far is shellfish, and of that he only likes crab and scallop).  His last endoscopy showed that the bison caused no ill effects - wahoo!!! That means he can continue eating bison burgers, steaks, roasts, and whatever else we want to make from the very delicious buffalo.  Because of the good test results his doctors now have him doing a trial of beef (which is supposed to be chemically very similar to bison).  Kiddo had shown a skin reaction to beef years ago, and it showed up in his blood allergy test as well, but the doctors are hoping that maybe those were false positives.  Needless to say we are are super excited about adding beef in - it makes shopping for food so much easier and less expensive.  We realize that the next test may show that beef needs to go out of his diet again but we're just going to enjoy the next few months regardless.

(For previous post on Kiddo's health check out these links: article, ulcer, surgery, and allergy testing.)


Books? You mean I'm supposed to be blogging about books?

Since I lost my job I have been in an enormous reading slump.  All the books on my shelves that I've wanted to read just don't appeal to me at all.  For a long while I didn't even listen to audio books - oh the horror!  I'm getting back into things now but I've found that I really need to read some lighthearted, fun, and even funny books (which are SO not my norm). 

Here's a list of what I've read and listened to (but haven't reviewed) since November:

Read

• Towers of Midnight
• The Prayers of Agnes Sparrow
• New York Regional Mormon Singles Dance
• The Blessings of the Animals
•  Mennonite in a Little Black Dress

Listened to

• Twelve Angry Men
• The Botany of Desire
• Les Miserables
• Dancing in the Streets
• The Postmistress
• Matched
• The Tiger
• Tom Sawyer
• The Tortilla Curtain
• Robinson Crusoe

I'd like to do some mini reviews of these books because there's no way I'll go back and do full reviews on all of them. 

My question to you is: Which book(s) are you most interested in hearing about?  Let me know in the comments and I'll start with those reviews first.

I know that I won't be blogging every day like I used to but I do hope to have new posts up several times a week.  We'll see how that pans out, but in the meantime I look forward to hearing from all of you.

random updates

On Being Unemployed

I'm still getting used to this being at home without a job thing.  When I was working I was in front of my computer all day long and often had time to check my Google Reader to see what all of you were up to.  But being at home, I often don't check my Reader until late in the day, at which time there are hundreds of posts and I am too overwhelmed to read them.  To be honest, I've been clicking "Mark All As Read" more often than not. Sorry!


On Reading & Blogging

I am getting some reading in, but not a ton. I finished Towers of Midnight and Prisoners in the Palace. I'm still working on The Prince, and I've started The Last Town on Earth (which I promptly misplaced).  I'm also still listening to The Count of Monte Cristo.  I have absolutely NO motivation to review any of these books though, so I'll probably only do a quick paragraph for each ... eventually.

I may not be posting as much for the next few weeks, at least until I get myself onto a schedule. That goes for commenting as well.  I'm still here, I'm just trying to reorganize my life ... which is MUCH more complicated than I'd expected.


On Kiddo

Kiddo flew on a plane by himself for the first time on Tuesday.  His aunt and uncle wanted him to visit them in Boston for a few days then drive back to Maryland with them on Thanksgiving.  I gave him the choice - did he want to do it, or did he want to wait until next year?  (We fly all the time but he's never done it on his own.) He panicked a big at first but then decided he really wanted to go.  For the next few days he'd walk around singing "Shipping Up To Boston" at random times. The morning he left we had to be up at 4:30am to get to the airport by 5:30am.  He got nervous again just before he got on the plane and he almost started to cry, but we hugged and he took a deep breath and headed down the ramp.  The flight is only 1 hour 20 minutes and he told me later that everything went just fine.  He played his Nintendo DS almost the whole way there.  And get this - when the flight attendant said to turn off all electronic devices, he figured he'd better switch off his feeding tube as well (it's got an electric pump).  Hubby and I got a kick out of that one!  At the moment he's having fun with his aunt and uncle in Boston, getting to do pretty much whatever he wants to do.  What fun!


On Thanksgiving Food

I used to love Thanksgiving because of all the wonderful food but now it frustrates me because there is so little that Kiddo can eat. I mean, there's only so much you can do with eggs, rice, white potato, corn, carrots, broccoli, apples, grapes, peaches, mangoes, tapioca, and a little bit of shellfish.  For the longest time even the smell of the holiday food would make him sad.  I'm excited for this year though. At his last doctor's appointment the allergy and GI docs agreed that he could add in a few foods that he really wanted.  They have him trying bison meat (at least for now - the next test will probably prove it's bad for him, but he'll enjoy it until then) so he can have steaks, burgers, ribs, tacos, etc.- all of which he's really enjoying.  He also asked for cucumbers so he can eat dill pickles again.  We're going through a jar of pickles every few days now, and I LOVE it.  Another thing he wanted was lentils.  He used to like them years ago and I guess he figures he'll still like them now (who likes lentils?! certainly not me!).  And in a few weeks they'll let him try berries again, though he's not excited about that AT ALL - he never was a fan of berries. 

All that to say that THIS Thanksgiving I'm excited because Kiddo will get a real meal of things he actually wants to eat. AND he told me that he's looking forward to all the smells because they remind him of the foods he used to eat and love, and they bring back good memories.  Can I just tell you how much I love my Kiddo?! HE TOTALLY ROCKS.


I hope all of you are doing well. If you are celebrating Thanksgiving this week enjoy your day! If not, enjoy your day anyway! Hopefully I'll be back and involved in the blogging world really soon. :)

Mother's Day Letter

This post is part of the Mother’s Day Letters Project at Charm City Moms.


Dear Kiddo,

Mother’s Day is coming up this weekend. Your dad has been asking me what I want and, as usual, I haven’t given him much of an answer. Do you know why? Because I already have exactly what every mom wants for Mother’s Day – a wonderful child who I love and who loves me back.

You are kind, loving, and generous. Your magnetic personality draws everyone in around you, no matter what their age. You don’t ever make fun of people and you do your best to make sure no one else does either.

You are huggable and kissable and you don’t fuss when I do all that hugging and kissing. You are not (yet) embarrassed by me or by your dad and you like to have us around (you are 8 years old now … I wonder how many more years that will last?).

Despite all the difficulties that have been thrown your way, you continue to think positively. You don’t complain (much) about your restricted diet or your feeding tube, and your outlook on life is fantastic.

That’s not to say that you are an angel. You try my patience on a regular basis, and you can’t seem to remember anything I tell you (unless it is about something you want to do – then you never forget!). But that is to be expected; you are only human, and a boy at that.

Regardless of who you are or how you act, I am your mother and I will love you always. It just makes things that much better when I can honestly say that I am proud of you every day.

I am so enjoying watching you grow up, and I can only imagine what an amazing man you will become one day. I love you Kiddo!

Love, Mommy

An Excellent Opportunity!

Remember that "what if?" book I told you about a few days ago?  The one designed to help you plan for the unexpected?  Check out this email I received from the author:

Thank you so much for such a thoughtful review. I'm happy to hear that the book is useful.

Please let me know a 501(c)(3) charity that's dear to you, so I can make a donation of 20% of total website book sale revenues from the next five days (today up through the end of Saturday).

Best wishes,

-Mark Gavagan

How cool is that?! Of course I knew right away which charity I wanted to support - the American Partnership for Eosiniphilic Disorders (www.apfed.org).  This is the organization that supports research for the disorder that Kiddo has.

Many of you commented on my original post that you were interested in these books.  I encourage you to seriously consider making a purchase of either the big binder or the smaller booklet between now and Saturday.  I'd love to be able to channel a bit more funding to APFED in Kiddo's honor!

Kiddo's Latest Health + Hockey Updates

Health

Kiddo had another endoscopy done last week.  The doctors have had him eating eggs for a few months and they wanted to see if it has caused any problems internally.  What they found was that despite the extremely high dose of Kapidex he's on (it's basically a stronger form of Prevacid), he had developed an ulcer. Go figure!

We got the endo. results today and guess what? THEY WERE EXCELLENT!  He's never had such good test results in his life.  He can keep eggs in his diet (wahoo!) and will be able to start adding a few new foods this week (we're waiting for the allergist to say which foods).

As for the ulcer, the biospy didn't show anything so the doctor is thinking that his stomach is simply producing too much acid. She said it is likely hormone related and that she'd give us more info on that soon. I'm not really worried about this, considering that 1) it doesn't bother him at all, and 2) the other news is so fantastic!


I guess the fact that Kiddo has now come down with the vomiting-aching-sleeping-on-the-couch flu is the price we pay for getting all this good news. :)



Hockey


The Winter Session of ice hockey ended a week or so ago and Kiddo got to attend his first hockey banquet.  He had a great time sitting with his team and didn't really care that he had to bring his own food - he's totally used to that.  Each of the 100+ kids had a short blurb about them in the yearbook.  Here's what the coaches said about Kiddo:

[Kiddo] is one of the most competitive players in our program.  He will do anything to win.  He scores goals, back checks, and occasionally trips people.

For those of you who know hockey, yes, my child is becoming a goon.  Kidding!  But seriously, he does have an amazing competitive drive that was never apparent until he got into this sport.

He's already started the Spring Development Program (which has 4 ex-pro coaches) and can't wait until he qualifies for travel league.  I can see it now: the next 10+ years of my life will be spent in freezing hockey rinks toting smelly equipment ... and I'll love every minute of it!

Thursday Rambles

Here's some of the bad and good stuff that's been going on lately ...

• I'm sad to report that we are now dog-less. We had to put our 11 year old dog, Jasmine, down on Friday (3/19/10). She was not in the best of health and she spent that day having continual seizures. It was a hard day for all of us. We've decided not to get another dog, at least for the present. Jasmine's death comes two years after the death of our other dog, Dopey, from cancer at age 9. This is the first time Hubby and I haven't had a dog together since we've been married, and Kiddo has never been without one. (And is it just me, or has there been a spate of bloggers losing dogs lately?)
  
  
• Kiddo had another endoscopy on Tuesday (3/23/10). The procedure went well, no complications. We'll get the results late next week - that will let us know whether he can continue to eat eggs or whether they are causing problems in his esophagus. (For those who are new here, you can get overview of Kiddo's disease at this link.)
  
  
• Kiddo's doctor did find a problem though - he has a stomach ulcer. This makes no sense (to us or to the dr) because he is already on such a high dose of antacid - more than most adults are prescribed - that there is no way an ulcer should develop. So they did a biopsy of that as well, and we'll get those results along with the others late next week.
  
  
• On a lighter note, I am ridiculously excited by the box that arrived today - in it is my copy of 1,001 Books You Must Read Before You Die, the revised edition, which just came out this month. The book is more than 3 inches thick and has almost 1,000 pages. I can't wait to browse around inside and see why specific books are included on the list. My first task is to read the segments that pertain to all the books I've already read, then I'll check out books that I should read in the future.
  
  
• In other bookish news, I started reading Venetia Kelly's Traveling Show last night and I really like it. I only read a few chapters before I forced myself to turn off the light, but I can tell already that it will be a struggle to put it down each evening.
  
  
• I'm still struggling through Black Hills. I put this book aside for over three weeks but I do want to finish it so I can discuss it via Skype with a few bloggy buddies. There are parts of the book that are amazingly beautiful and (more) parts that are incredibly tedious. I'm trying to read a few pages each day but it doesn't seem like I'm getting any closer to the end.
  
  
• Yesterday was Grandparents Day at Kiddo's school. All four of his grandparents were able to attend - they sort of overwhelmed the classroom, considering that most of the kids didn't have any grandparents with them, and the others only had one each. Luckily Kiddo's grandparents don't mind being shared. They all had a great time!
  
  
• I found a spare calendar in my office that has a "tea" theme. Each day there is a tidbit of info about tea and I'm finding it fascinating. If you follow me on Twitter (I'm @Age30Books) or Facebook you may have noticed that I've been posting some of these tidbits there.
  
  
• Several TV shows I watch are coming back from their mid-season break soon. What does it say about these shows when I can't seem to care whether or not they come back at all? Sad.
  
  
• Next month my book club is meeting at a tea house to discuss Three Cups of Tea. I've heard mixed reviews about the book so I'm not sure what to expect but I'm REALLY excited about the place we're meeting.
  
  
• Why is is that blogger.com's spellcheck tool doesn't recognize "blogger" as a word?
  
  

That's about it for my update. How is life treating all of you, my lovely readers?

Kiddo in the news

Kiddo was profiled for a local newspaper back in December and the article just came out this past week. If you are interested in reading about Kiddo's health issues and his love of hockey (as if you didn't know about it already!) then follow this link to access the article.

a very public THANK YOU (and Kiddo's health update)

Because my blog reaches so many people I wanted to post this thank you letter here so that people around the world will understand just how wonderful Mr. Leonsis is. For those who don't know, Ted Leonsis is the majority owner of the Washington Capitals Ice Hockey team. (This post also includes a Kiddo health update.)


Dear Mr. Leonsis,

Back in November you had us out to the Verizon Center to watch the Caps game in the owners box. It meant so much to Hubby and I that you spent time talking to Kiddo about his allergies and his feeding tube; you treated him as we do, like he is a very important person. Then you took Kiddo to the locker room to meet the guys. As I told you then, this was an absolute dream come true for him. In fact, he wants to wear his signed jersey just about every day. I already sent you some photos from that night but here is a link to all of them so you can see how much fun Kiddo (and Hubby and I) really had: http://www.facebook.com/album.php?aid=2041502&id=1364603680&l=4923701e53

At that game you told us not to be shy in asking for tickets to future games for Kiddo. When Kiddo was due for another surgery in December I took you up on that offer. Hubby and I wanted to give him a really fun night to help him think positively about the surgery. This time you sent us four tickets for some incredible seats not too far off the ice. We had a BLAST!

Kiddo brought his friend X; they play on the same hockey team and have been buddies since they were 4 years old. I did their hair up before the game so they were BOTH rocking the hawk this time around.

The game was incredible. Both boys had an absolutely great time. Here's a video of them "unleashing the fury" ...



The Caps were down at first but they came back strong and won it in overtime. The cheering from the boys (and from us) was deafening.

At the end of the game Kiddo turned to me and said "You know they only won because I was here - I'm their good luck charm!"

Thank you so very much for giving us tickets to this game. We had so much fun together, and it was a great way to enjoy the weekend before Kiddo's surgery.

Four days later we headed up to the hospital. Although we were concerned about the possibility that Kiddo would wake up in a lot of pain, he had a great attitude before surgery. In fact, he was quite silly in the pre-op room.

All the other kids in the various pre-op rooms were quiet (either due to nervousness or medication) but not Kiddo - HE was a nut, as you can see in the video below.



After a while they took him back for the procedure and we headed off to wait. The plan was to remove that long tube that you saw him with and to put in a new "button" type tube that is the size of Kiddo's thumb. Kiddo was nervous about this change but we knew it was for the best. While they were inside of him they were also planning to take biopsies (as they do during every endoscopy) to see if his esophagus has healed any since the feeding tube was put in.

I'm very glad to say that the surgery went as planned, no problems. Kiddo woke up in a small amount of pain but nothing over the top. That night he helped us decorate the Christmas tree and even put the star on the top. The next day he wanted to go to his power hockey lesson; he was in pain, but he skated through it. Within the week he was just about back to himself.

In the time since then, the new tube has proved to be a blessing - although it did take a bit of getting used to. Kiddo was back out playing hockey within the week, so that proves that he's back to normal.

Here are pictures of Kiddo with the old tube and the new tube so you can see the huge difference.

The night before the surgery:

Two days after Christmas (and no, he isn't eating that, just making it - he wanted to do the project with all his cousins regardless of whether he could eat it or not):

It is pretty amazing to me how small this new "button" is, especially after the long tube he had before.

We'll get the biopsy results on January 4. We're praying that there will be good news, but whatever happens, we'll be ok.

I can't thank you enough for the interest you've taken in Kiddo, and for the tickets to the game. You are an inspiration to us and we wish that there were more people in the world like you. Thank you, Thank You, THANK YOU.

Sincerely,

Heather J, Hubby, and especially Kiddo

PS. Happy New Year to you, your family, and the team. We'll be spending the day with X's family watching the Winter Classic together. :)


(For other Kiddo-related posts, click here.)

Kiddo Update, with pics and video

Thank you to everyone who has been asking about Kiddo, praying for him, or sending good thoughts his way. You have no idea how much I appreciate your concern. I've been wanting to update you on the whole surgery/recovery process but have been unable to until now. Fair warning: this is going to be a LONG post.

After a fabulously relaxing family weekend at the beach (which we all needed), Kiddo had surgery to put in a feeding tube on Tuesday, 9/29. The prep for the surgery was identical to the prep we do every six weeks when Kiddo has his regular endoscopy appointments: same part of the hospital, same staff, same routine. Everything was fine until about 10 minutes before the surgery ... that's when Kiddo got nervous. He has no problem going under anesthesia (in fact he likes it!) but at the last minute he got very afraid of getting the tube and how it might feel afterward. It took lots of hugs from me and lots of tears on his part before he calmed down, and he was still nervous when they wheeled him down the hall into the operating room on his hospital bed.

The surgery was supposed to take 45-60 minutes so the doctors intubated him, just to be on the safe side. He's never had that done before but Hubby and I knew it would mean a very sore throat when he woke up.

After the surgery was completed the nurses called us back into the recovery room to wait for him to wake up. Normally he take about an hour to wake up after anesthesia but this time it took only 10 minutes because he was in such horrible pain. He started crying as soon as he woke up because both his stomach and his throat were burning. It hurt so bad that he couldn't catch his breath; he thought he couldn't breathe so he sat up and started freaking out a bit, which of course made things hurt more. The nurse was right there with a shot of morphine though, and he calmed down pretty quickly. I had to make Hubby leave the room though because he was getting too upset himself.

After the morphine helped him relax, Kiddo clung to my arm and dozed a bit. He wouldn't let me go at all. Based on his pain level the nurse gave him another shot of morphine shortly after the first one. He was definitely relaxed after that, but still in lots of pain.

Eventually we were moved into the private room where we'd be spending the night. Let me just say right here that the staff at University of Maryland Children's Hospital (with the exception of one nurse) were fantastic - they couldn't have done a better job. It is a teaching hospital so there were lots of people in and out while we were there, but they were all wonderful even when they were rather repetitive.

Just before we'd left the recovery room Hubby's parents arrived. That was great because Hubby really needed some support right then. They stayed for a while but then my parents arrived and my in-laws headed out. Then my sister, her husband, and her two boys got there. Needless to say, our little room got crowded really quickly.

my side of the family with Kiddo

You might think from those pictures that Kiddo was feeling pretty good ... alas, no. In point of fact, he had four shots of morphine by that point and was floating in la-la land. He still couldn't talk (his throat was very sore and he wasn't allowed to drink anything yet) but he definitely let us know if we were talking too loud and bothering him. :) However, as soon as I took out the camera he plastered a smile on his face for the pictures. Man, have I brainwashed the kid or what?!

Lots of family and friends sent Kiddo gifts, some of which we brought to the hospital to keep him entertained. If you look at his face in the next few pictures you'll get a better idea of what he looked like most of that first day in the hospital.

that's me in the blue sweater aboveMe, Hubby, and a drugged out Kiddo (above)

Later that night after everyone else left, my in-laws came back to visit. Kiddo was getting Tylenol every two hours by then (rather than more morphine) so he was a bit more alert. Enough to play with toys, as you can see.

Grammy and Kiddo

Sometime that evening Kiddo started getting flushed in the face, warm to the touch, and he started shivering. We were concerned that he had a fever - a common but still not good side effect of the surgery they'd warned us about - and that would mean another night in the hospital. However it seemed to be merely a side effect of the anesthesia or the morphine and it went away about 30 minutes later.

Around 1:30am Kiddo and I went for a walk down the hall. In the hub between the various hallways on this floor there is a "forest" with seats and a small slide for the kids to play on. Kiddo had just enough energy to make it to the seat (below) ... and then he didn't want to move. It took quite a while to get him back to his room, and he was in a lot of pain by that point.

At this point we tried to get some sleep and it worked ... for a little while. Remember Kiddo's evil plan? This video shows what actually happened, but the volume is really low so you have to listen hard. Also, the video shows the tube itself (just so you know).



After we made that video I went back to sleep in my chair and Kiddo watched tv until 6am. I finally made him turn it off and get some rest. As you can imagine, I was pretty tired the next day.

Through a series of delays on the part of the home medical supply company, we thought we'd have to stay at the hospital that night (9/30) as well. Kiddo was NOT happy about that (neither was I) so I tried to lift his spirits throughout the day. In the early afternoon the Child Life gal came in to see if we needed any toys or activities - YES! She came back with a few action figures that kept Kiddo busy for quite a while. Later that evening it was scrapbook night on the children's floor; Kiddo wasn't up to walking again so I headed down to the tree room and picked up some activities and brought them back to the room. They definitely did the trick.

Hubby sent his dad up with some gifts that were waiting at our house. Kiddo opened them while talking to Daddy on the phone. Again, it was just enough to improve his mood and resign him to another night in the hospital.


My mom came up that evening with a friend to cheer us up a bit. At 10pm we got the news that we could finally go home. YEAH! So we loaded Kiddo up into the wagon (much better than a wheelchair, don't you think?) and my mom took us home.


We were exhausted but glad to be home (please excuse my messy house, but yes, that is my new bookshelf behind the couch!).

Kiddo with cards and gifts from school, friends, and family (below)

The first few days without food were REALLY hard for Kiddo. He is usually such an upbeat kid but he had one day where he was completely depressed and he moped around literally all day. We decided to schedule a few short visits with friends to help him get his mind of things, and that helped a great deal. These next pictures were taken on 10/3, just four days after the surgery.


In the two pictures above you can see the feeding tube attached to the pole. That is what we use at home. He needs to do one-hour feedings three time a day then an eight-hour session over night. When he's at school or out someplace else, he's got this great backpack he can wear that holds the bag of formula and the pump. You can see it in the picture below.


So ... that is the briefest summary I can manage of Kiddo's surgery. Everything is healing well and we go back to the doctor for a follow up on 10/8. If all is well, Kiddo will be allowed to eat a few things that afternoon. That would be wonderful.

Oh, and one more thing. Ted Leonsis, owner of the Washington Capitals Ice Hockey team (Kiddo's favorite sports team in the world) heard about Kiddo, and he even mentioned Kiddo on his blog - isn't that fantastic?! Kiddo was thrilled.

As always, if anyone has questions about Kiddo's surgery or anything else please let me know - I'm happy to answer anything that I can. And thank you all again for caring about my Kiddo.

Kiddo's Vlog Update

In case you missed my last post, Kiddo is getting a feeding tube on 9/29. Here's Kiddo to tell you about all this himself. And he wants to share his evil plan for our overnight stay at the hospital ...



Gotta love Kiddo!

The surgery to put the feeding tube in is pretty fascinating ... creepy, but fascinating. If you don't want to know the details SKIP THIS PARAGRAPH! What they'll do is take the endoscopy tool with the camera on the end of it and tie a wire to the end of it. They'll send the tube and wire down his throat into his stomach. Then they will insert a needle from the outside of his stomach through into the inside of his stomach. The wire will then be pulled out through that needle hole. At this point, the wire is coming out of his stomach and out of his throat. They will then tie the feeding tube to the wire coming out of his throat and start pulling on the part coming out of his stomach. They'll keep pulling until all the wire - and the feeding tube attached to it - is sticking out of the needle hole from his stomach. So there is no cutting involved! The tube will be held in his stomach by a round plastic piece the size of a quarter. Like I said, fascinating, but creepy.

As you can see in the video, Kiddo is doing pretty good on the whole. Thank you so much to everyone who has commented both here and on Facebook - your support means a great deal to my family.

If you have any questions I'm more than happy to answer them so please ask.

And now I'm off to clean the house while Kiddo and Hubby are at the Caps game. Oh joy.

Kiddo's Health Update - Big Changes

We interrupt this blog to bring you Kiddo news ... and I apologize in advance for the rambly-ness of it, but I can't seem to think straight at the moment.

Back in May Kiddo underwent additional testing for his food allergies and esophageal disorder (you can read about it here and here and here if you are new to my blog). As you may recall, Kiddo has Eosinophilic Esophagitis (for an explanation of it click here then click on "About EE"). Throughout the summer he was on a severely restricted diet and he had to drink 20 ounces of an amino acid-based protein shake every day. Two weeks ago he went in for another endoscopy to see if this treatment plan was working.

Unfortunately, it wasn't. In fact, Kiddo's EE is worse than ever.

We realize now that he simply can't eat any protein whatsoever. The next step is to put in a feeding tube so that he can get the nutrition he needs. He is scheduled for surgery on Tuesday, 9/29. It is a simple procedure but he'll be in the hospital overnight just to be on the safe side - and of course I'll be staying with him. At first he'll have a PEG tube and after three months they will remove that and put in a G tube (you can see examples of both tubes here). This is the point where I tell you how truly grateful I am that my husband was a paramedic for 10 years; he understands all this stuff and knows how to clean and care for Kiddo's tube once it is in. I, on the other hand, am completely clueless.

For the first 6 weeks Kiddo will not be allowed any food by mouth, but after that they will allow him to add about 5 foods per month back into his diet (provided that his esophagus heals the way they expect it to). No proteins though - not likely for a long time, if ever. He'll be able to add several fruits the first month, a group of veggies the next month, and so on. He's not happy about the no food thing, but considering that we thought it might be a permanent food ban, this really isn't that bad, and Kiddo realizes it. The doctors told him that he'd be allowed to add his favorite food back in after 6 weeks - Burger King french fries. He's practically giddy with relief over that.

You may wonder how we are all handling this news.

Kiddo is doing very well. He was scared about getting the test results because he thought he wouldn't be allowed to eat any more, ever. Now that he knows he will, he's surprisingly fine with all this. In fact, as we were leaving the hospital after getting the test results, he got in the car and started singing Bob Marley's, Three Little Birds: "Don't worry, about a t'ing, 'cause every little t'ing gonna be alright." Needless to say, that made us all smile.

Hubby is having a harder time. He likes to think he is in control of everything (ha!) and of course there is no controlling this. Plus with his medical background he is more aware of the potential risks and side effects of both the surgery and the tube. But he's adjusting and handling things better each day.

I'm doing pretty good with all this. I'm one of those people who don't worry about things in the future - I think about what is going on right now and figure out the best way to handle it. The feeding tube truly is the best thing for Kiddo right now and I'm ok with that. Kiddo is actually looking forward to it in a way because he hates drinking that protein shake and it will soon be pumped in through the tube. And when Kiddo is happy, Mamma's happy. On a more personal level, I completely trust that God has a plan for all this; I may not ever know what it is, but there IS a reason that we are in this situation.

Looking ahead, Halloween will be tough. I'm planning to ask the doctors if he can have at least a few pieces of candy that night. By Thanksgiving he should be allowed a few foods and I'm hoping to make him a nice (if limited) meal. Christmas will hopefully see even more foods, and his birthday in January should see more yet. I hope.

If you've stuck with this post until now, thank you for your concern. I'll definitely keep everyone posted via my blog, Facebook, and Twitter ('cause I finally gave in and joined - @Age30Books).

Kiddo wants to do vlog to tell you all about the latest developments and his evil plan to keep me up all night long at the hospital - hopefully we can do that tomorrow.

For those of you who are the praying kind, here's my list of requests if you wouldn't mind:

• safe surgery for Kiddo on o9/29/09
  
• easy adjustment for all of us, especially Kiddo
• a few pieces of candy allowed for Halloween
• continued healing once foods are added back in
  

Kids' Picks (and a Kiddo Update)

Every month 5 Minutes for Mom does a feature called Kids' Picks where bloggers are invited to write about the books their kids are interested in at the moment. I try to write about what Kiddo is reading on a regular basis but I'm failing miserably at it, so this is my kick in the butt to actually do it. Here goes!

(For those new to my blog, or here just for Kid's Picks, Kiddo is my 7 year old son.)

We've had dragon theme in our house recently. I think Kiddo's love of dragons started with Harry Potter but now it has grown to encompass anything dragon related. He was even excited about the Barnes & Noble gift card that I won from Chartroose because it had a dragon on it (thank again Chartroose!).

But back to the books ...

A few weeks ago Kiddo came home from school with a library book called George and the Dragon. I've mentioned before that Kiddo is really struggling with learning to read but this book was PERFECT for him. First off, the story is adorable: A dragon is terrorizing the land but has a fatal flaw - he's afraid of mice. George is a mouse who accidentally learns that he can scare the dragon, so he becomes the protector of the castle. Second, the illustrations are fun: every page contains a glimpse of the dragon, and everything is bright and well-designed. And finally, the story is short: There's only about one sentence on each page, something Kiddo can handle without much difficulty.

The book was supposed to go back to the school library one week later ... but it has now been at our house for over a month. Since he loves it so much, I promised to buy him a copy. Of course, now I find out that it is no longer in print, and Amazon.com doesn't have it. So I'm on a hunt to track down a copy for him - wish me luck!

The second book with a dragon theme is one I picked up for Kiddo at his school book fair: Puff the Magic Dragon, book and music CD. I'm sure most of you are familiar with the old Peter, Paul, and Mary song by that same name (if not, I'm posting the video down below). I loved that song when I was a kid but Kiddo had never heard it. The book has lovely illustrations and the text is simply the words to the song. Kiddo and I took turns reading one page each. On my turn I'd sing the words. Kiddo quickly caught on to the chorus and enjoyed reading those pages. After we read the book - which we BOTH enjoyed - we popped in the CD and listened to the song. Kiddo LOVED it. In fact, he listened to it over and over again, and wanted to read the book several times over the next few days.

The CD has two other songs on it: The Blue-Tail Fly (which I remember singing as a child) and Froggie Went A-Courtin' (which I remember one of my grandfathers singing to me when I was very small and he was bouncing me on his knees - it is one of my few memories of him). Kiddo enjoyed both of these songs too, but not nearly as much as Puff.

A quick Kiddo update ...

For those who have been following along with Kiddo's oh-so-fun medical issues lately, thanks again for your thoughts, prayers, and comments. I love hearing from all of you and Kiddo thinks it is really COOL to hear from people he's never met. Like I said before, he thinks he's famous now.

We found a way to make the powdered version of the calorie/protein formula more palatable (because it really tastes nasty). We mixed orange juice, orange flavored Rice Dream (a rice-based dairy free ice cream), a bit of sugar, and lots of the formula in the blender and made a smoothie. Kiddo LOVED it. He's also drinking it in the mornings with orange juice and a bit of sugar. He still isn't up to the 32-42 ounces they want him drinking in one day, but he IS making progress. We are hopeful that he won't need the feeding tube after all.

The removal of chicken from his diet has been hard, but not as bad as we feared. We're coming up with new ways to make turkey (which is the only meat he can eat right now) and trying to think of ways to hide some beans in his meals (since he doesn't like them but they do have lots of protein). My newest idea is to puree some beans and put them in some turkey chili - that way he can't pick them out or say he doesn't like them. Ha! I'll get him there! ~LOL~

I promise to keep you all updated as the weeks go on. Thanks again for all your support.

And now that video I promised you ...

Friday Finds 05/15/09 (& Kiddo Update)

Happy Friday to all! Thank you again to all who have commented on my Kiddo update posts lately. Today's update: He is drinking the protein formula but he's not getting enough down during the day. Unless he can up his intake over the next few days he's going to need the feeding tube. He's working really hard not to get to that point but despite his excellent attitude I don't know if he can do it. I'll keep you all posted on his progress.

And now, this week's Friday Finds ...

1. A Voyage Long and Strange: On the Trail of Vikings, Conquistadors, Lost Colonists, and Other Adventures in Early America, by Tony Horwitz – "What happened in North America between Columbus's sail in 1492 and the Pilgrims' arrival in 1620? On a visit to Plymouth Rock, Tony Horwitz realizes he doesn't have a clue, nor do most Americans. So he sets off across the continent to rediscover the wild era when Europeans first roamed the New World in quest of gold, glory, converts, and eternal youth." My lovely friend Ti emailed me about this book because she thought I’d enjoy it … and she looks to be correct!
   
   
   
   
2. Cleopatra and Antony: Power, Love, and Politics in the Ancient World, by Diana Preston – According to the review that same friend Ti told me about, “If there is a better book about Cleopatra for today's reader, I don't know what it is.” Now THAT is a ringing endorsement.
   
   
   
   
   
3. Julian, by Gore Vidal – Bibliolatrist says this book, about ancient Roman emperor Julian Augustus “is what historical fiction should be: fascinatingly intelligent, deeply moving, and highly entertaining.” Gotta love it when a blogger you trust gives a review like that!
   
   
   
   
   
   
   
   
4. A Wall of White: The True Story of Heroism and Survival in the Face of a Deadly Avalanche, by Jennifer Woodlief – I’m a huge fan of good non-fiction, especially stories that take place in snowy regions. S. Krishna reviewed this book and had some great things to say about it.
   
   
   
   
5. Tall Man, by Chloe Hooper - "In 2004 on Palm Island, an Aboriginal settlement in the "Deep North" of Australia, a thirty-six-year-old man named Cameron Doomadgee was arrested for swearing at a white police officer. Forty minutes later he was dead in the jailhouse. The police claimed he'd tripped on a step, but his liver was ruptured. The main suspect was Senior Sergeant Christopher Hurley, a charismatic cop with long experience in Aboriginal communities and decorations for his work." I learned about this one from the Simon & Schuster Academic History newsletter.

What books made it on to YOUR list this week? Post them in the comments or join in the fun at MizB's blog.

Kiddo's Results Are In ...

To follow up on the last two days of Kiddo info ...

This morning we went to the doctors office together to get the results of Kiddo's patch tests. Good news and bad news ...

The Good News: The patches showed allergies to four foods. Two we already eliminated from his diet based on the skin tests earlier this week: barley and oats. Two others were completely new and unexpected: green beans and chicken. Yup, you read that right - CHICKEN. The reason that is good news is that it explains why the test results kept getting worse and worse as we took more food away - Kiddo was eating more and more chicken! The other good news is that he did not show allergies to beef and pork, foods that were already eliminated from his diet.

The Bad News: 1) He's allergic to chicken ... and that is one of the main foods he eats. We have to get rid of all the chicken-based products in our house and replace them with turkey-based items (if they are even available). 2) We can't add beef and pork back into his diet for at least three months. 3) He has to drink 42 ounces of protein formula per day. Not only does it taste bad but it is ridiculously expensive - the main option is $115 for 27 juice box-sized drinks, and he's have to drink 5 per day. 4) If he can't keep up with the required protein formula he will have to go with the feeding tube, inserted through the nose several time each day or have surgery to put a tube from his stomach out of his side.

On the whole, I am actually relieved by today's appointment. At least we know what is causing the problem now (most likely). At the same time I'm very worried about having to do the feeding tube. They are giving him one week to try drinking the formula, then they will reevaluate his situation.

Thank you to everyone who has been praying for us and keeping us in your thoughts. I will keep you updated on his progress over the next week.


UPDATE: In the comments Julie P. mentioned getting insurance to pay for the protein formula and I wanted to explain about that a bit. Kiddo's doctors told us that in 2008 a law was passed that mandates insurance coverage for this. That is a great thing, but I'm not sure what type of coverage we'll get. For example, Kiddo is on a high dose of Prevacid right now. Without insurance it would cost us $350/month. With insurance we pay $250. So we are saving some money but this is still a huge expense every month.

ANOTHER UPDATE: Just to clarify, here is the list of things Kiddo cannot eat for now, with an * by anything we are sure he is allergic to: milk*, eggs, wheat*, soy*, fish, shellfish, peanut, tree nuts (esp. almonds*), beef, pork, barley*, oats*, green beans*, and chicken*.

Today's Kiddo Update

Thank you to everyone who expressed support for Kiddo, Hubby and I - your response to my post yesterday was absolutely wonderful. I read some of the comments to Kiddo this morning ... now he thinks he's famous. :)

Here's today's update:

Hubby took Kiddo to have all the tape removed. As you may recall, it covered his entire back. The process of getting it off was VERY painful. In some spots the tape took off a few layers of skin. Needless to say, there were lots of tears.

After they left the doctor's office they came to visit me at work. I told Kiddo I wanted to update my blog with more pictures today so this is how he posed for you all. (Just so you know, he is supposed to be the airplane mechanic from Indiana Jones and the Raiders of the Lost Ark - you can see him in this clip at 1:37 in.)

Here are some views of his back. The dark lines are tape residue. The numbers indicate where specific samples were placed. The dark spots you see are food residue from the samples. You may also see red circles - that is where the allergic reactions are starting to occur. Not sure that you want to see a closer view but if you do, just click on the photos and they'll open up larger in a new window.


This last photo is a closer view of the top of Kiddo's back. That red mark is where some of his skin pulled off along with the tape. It looks and feels like severe sunburn.


If the tape removal went well Kiddo was going to go to school this afternoon. After all that pain though, we're not sending him. Instead he's going over to Grandma's house to take a shower (his first since Sunday night) and get the food off his back. He can only rinse, not really wash, since the doctors are seeing him again tomorrow morning to determine the results of the test.

All three of us will be going to the results appointment tomorrow morning (9:30am EST, in case you'd like to pray for us then) but I will certainly update you all as soon as I can get to a computer.