Archive for May, 2008

Preschool Graduation

May 29, 2008 | Updates

Quick update.  I know, I always say that and then I ramble on and on.  But I’ll try to keep it short.  School is out tomorrow and today was Samuel’s graduation.  It was very cute!  I was sure to tell his teacher that she has ruined us for the rest of his school career because she was so wonderful she can never be replaced or matched :).  I hope she knows that I was telling the truth.  We are so sad to be moving out of her class.

Before I forget, if you didn’t get a chance to sign up with Revolutionary Money Exchange, do it!  The deal where you get $25 for yourself and $10 for Samuel is still on.  I got a check from them in the mail for signing up Tom and I and for those of you who signed up.  It was for $110!  So, it’s legit.  Who can pass up a free $25?!

So, we were able to spend Memorial Day camping and that was nice.  Samuel did really well.  He even spent about 8 hours outdoors with us on Sunday just napping and soaking in the fresh air.  By Monday, though, he was ready to come home and gave me a bad time about getting him dressed and ready that morning.  We got to stop for lunch on the way home and that night we went to see the new Indiana Jones movie.  It was good (what I could see of it).  Samuel was really on one and had his legs and arms flying all over the place while I held him on my lap.  We did make it up to last 5 minutes of the movie before he decided he was done with it all.  I gues his review of the movie isn’t that great :).  I liked it, though.  We ended the weekend with a few cards and presents for my birthday.  I’m now on the downhill side sliding towards 40.  (I’m 36.)  Not sure how I feel about that :(!

That’s about it.  I forgot to mention that a few weeks ago Samuel’s g-tube button got pulled out of his stomach by accident.  I asked Wesley to take him out of his bed and forgot I had him hooked to his feeding tube.  Wes picked him up out of bed and put him on the floor.  Then he realized that his feeding pump was running and figured it had come detached from his button and was probably leaking in his bed.  But when he checked his bed, he not only found his tube, but the button itself.  So, he pulled up Samuel’s shirt and sure enough, there was just a little red hole where the button used to be.  I freaked out a bit.  I knew I only had 15-20 minutes to get it back in or the hole would begin to close and the button I had wouldn’t fit.  But at the same time, it had been 6 months since the doctor showed me out to change it out.  I was frantically trying to find and read directions so I would do it right.  Eventually, I just put a new button in without directions and just off memory.  (Not that safe when working with someone with a memory as bad as mine.)  But it all turned out fine.  When I finally found the directions, there were a few things I did wrong, but nothing major.  So, one new task learned without too much trauma :).

I hope you’re all ready for summer.  I hope I am, too.  Five kids at home with me 24/7 for 3 months will be a little nerve racking, I’m sure.  But it will be fun, too!  Oh, yea, we’ve logged about 60 ABR hours so far.  We should be closer to 90 by now.  So, we’re going to have to push harder next month to make some of those up.  Honestly, it feels like we’ve done 200 hours.  Can’t wait until we have!

Until next time…

Love,

The Jewkes

A New Update…

May 21, 2008 | Updates

I can hardly believe it’s been almost a month since we returned from our Canada trip.  Things have been busy, as usual, and we have had a lot on our plate to catch up from being gone. 

Just 2 days after we returned from Canada, we had Samuel’s IEP meeting at school.  It went fine, but I am really worried about next year.  We have been really spoiled the last 2 years with a great teacher in Samuel’s preschool class.  And now that is ending.  I have only met his new teacher once, but I have heard that some children have had a difficult time in her class.  And, honestly, I just don’t know how to deal with any problems at school.  Up to this point, school has been an incredible blessing for Samuel.  He has enjoyed the time there with his teacher and peers.  But, like I said, we have been spoiled.  His teacher is incredible and I don’t know that I can deal with anything less.  For Samuel, school is an opportunity to get out of the house and enjoy himself and be around children his age.  If for any reason he does not enjoy school, I don’t know that I’ll see a point in sending him.  I guess we will just have to see.  But I know that Samuel requires a lot of attention, a lot of enthusiasm and a fast pace and I just don’t see that he is going to get that in his new class.  Let’s hope I’m wrong!

Mother’s Day has come and gone and I enjoyed myself :).  Tom was sweet and bought me a few nice things and then the kids made me all sort of cards and little gifts throughout the day.  It was a nice relaxing day and I even gave myself the day off from ABR.  Probably shouldn’t have, but it was nice!  The talks in church ended up being really nice, also.  It was a good day and it always reminds me of all the good things my mom and stepmom have done for me (as it should).  Hope everyone had a nice Mother’s Day!

The next day was the dreaded semi-annual dentist appointment.  Actually, I think just Samuel dreads it.  I was dying to take him because his teeth needed a cleaning so badly.  A little verced, some laughing gas, 1 dentist, 2 assistants and 20 minutes of mom and Tanner holding Samuel down and his teeth were pearly white again!  Yeah!  It was pretty tramatic for everyone, but the dentist was very good about it.  We did get x-rays showing that Samuel’s front 2 teeth are loose because he has knocked them on the floor so many times the roots are pretty well nonexistent.  He is also set to loose his two front bottom teeth probably in the next year or so.  Can’t believe he’s getting that old!  I went ahead the very next day and ordered the kits to send his baby teeth in when they fall out to have the stem cells extracted from them.  Who knows if they will help him, but it’s worth a try.

A few days later, we headed down to Salt Lake to have Samuel’s pump refilled.  We also reduced the dosage.  He is now down to 95 micrograms per day and they saw no reason to stop the decreases.  Hopefully, we can take the pump out soon.  But, the decreases are always difficult.  He had a really rough day the day after and then seemed to do just fine for a few days.  Now, he’s back to being so wiggly, you can hardly pick him up.  I just keep telling myself it will be a good 2 weeks before he gets over it.  But then I wonder if he really gets over it or if we just get used to it.  I don’t know.  Baclofen isn’t a smart drug.  It stops signals to all the muscles in the body (including the ones you WANT to move).  So I just can’t decide if keeping him on it to make it easier on me is better than taking him off it to see what he can do.  For the time being, we’re trying to get him off it.  But I just don’t know what the future will bring.  Honestly,  I probably am just thinking too much!

Speaking of medications, I have put Samuel back on his Neurontin and have weaned him off some of his Keppra.  He just never got over the agitation that came with putting him back on it after my dumb mix up of his seizure meds.  He’s done much better off some of the Keppra.  But on the downside, his seizures aren’t controlled as well.  So, I guess we’ll be making an appointment with the neurologist to see what other options we have.

Oh, we were also able to take Samuel swimming a few days ago and he actually liked it!   He normally screams through his baths and in the past, he has really disliked swimming also.  But he stayed in the water for a good 20 minutes before he decided he was done.  It was fun and guess what?  He weighs A LOT less in the water!  It was pretty nice.

So, that’s about it.  They turned the canal water back on for the summer on Mother’s Day.  That sort of ticked me off, but I got over it.  I guess they don’t think of me when they turn it on.  We have fenced in our yard and then fenced in a playyard for Nathan inside of that.  We have child door handles on all the doors to the outside and on the inside of Nathan’s bedroom door.  We still have him sleeping in his crib and when he’s not in the playyard fence, but is outside, then he is wearing a lifejacket.  I still have to get a wireless child leash that will beep if he gets too far from me and an alarm for the back sliding door and maybe a baby gate for the back deck.  I have to admit that I am seriously paranoid about this year.  In a few weeks, Nathan will be the same age Samuel was when he had his accident.  I just wish we could fence in the canal, but we can’t.  Anyway, not a good thing to dwell on…

Speaking of Nathan, he’s been sick for nearly 2 weeks.  I think he had one thing and then just as he was getting better, came down with something else.  His eyes have swollen up huge twice in those 2 weeks and he’s had several fevers.  They swabbed his throat for strep yesterday because it looked so sore, but it came back negative.  When I took him to the doctor, he had a fever of 105 degrees, which caused me to nearly pass out!  Luckily, motrin brought it right down.  But I’ll be glad when he is better.  He is just so terribly miserable right now.  And I certainly hope no one else gets it - especially Samuel.  Fevers tend to bring on seizures and big ones…

We’re doing ABR everyday, but haven’t seen any changes yet.  I didn’t expect any this soon, but some parents are already seeing changes in their children.  I have to admit, it makes me jealous.  I’m struggling a little because it’s hard to care for Samuel when he is so wiggly and not as happy as usual.  Here’s to praying it goes away soon.  I also so wish that I could find a way for him to communicate with us.  It seems like whatever we try, he isn’t willing to participate.  It makes me start to feel that maybe he doesn’t even understand us, but I do believe in my heart that he does.  I just keep hanging in there knowing that this is a marathon race, not a sprint.  But I can’t wait for the day that he can even somehow tell me “yes” or “no”.  What a wonderful thing that would be!

Schools out soon and things will be crazier than ever, but I LOVE the warm weather!  I hope you are all enjoying the spring.  I know I am!  Thanks for all your prayers!  Until next time…

Love,

The Jewkes

P.S.  We also celebrated a birthday party for Wesley!  It was fun.  And thanks to everyone who signed up for the Revolutionary Money Exchange.  We were able to raise $110 towards our next ABR trip!

Fundraising and Expenses of Trip

May 13, 2008 | Updates

Ok, here is a boring post for all of you.  Sorry :(.  But I promised to list for everyone the money we raised for ABR and how it was spent.  I want everyone to be sure that if money is donated to Samuel for a specific purpose, it will be used for that purpose.  In this case, I asked for donations to help pay for ABR therapy.  We ended up paying $1895 for this first session of therapy plus $175 for the supplies to perform the therapy at home plus $625 for a deposit that will be applied to our last session of training at the end of the year.  That totaled $2695.  (The actual totals below are a little different due to the conversion from American to Canadian money.)  In addition, we had many people offer to donate money to help with the trip expenses.  This ended up making it possible for Tom to come with Samuel and I, which proved to be invaluable in the end.  I just want to thank you all again for helping us in this endeavor.  You can be sure that we will use what we have learned and I do believe that it will benefit Samuel greatly.  

Alright, down to the meat and potatoes of it all.  I first need to list what was donated for the therapy and the trip.  I know that many of you would rather I not post your full names online, so I have just listed the first 2 letters of your first and last names below along with the amount donated.  That way, you can be certain your funds were included in the total.  Also, if you bought candles or bracelets, your whole purchase price is listed below because our business donated all of the candles and covered the shipping costs meaning that 100% of your purchase price could go towards Samuel.

Contributors:

• Er. Bi.     10
• Ga. La.     100
• Na. Lu.     200
• Sh. Ka.     5
• Ti. No.     200
• Ka. Un.     500
• Gr. Je.     300
• St. Mi.     200
• Ju. Jo.     21
• De. Je.     100
• Ka. Je.     230
• Ka. Ha.     42
• Ro. Lu.     250
• Ko. Ch.     300
• Go. Se.     50
• Sy. Ri.     10
• Co. My.     60
• La. Bi.     500
• Je. Mi.     200 
• Mi. Cu.     500
• El. Ev.     200
• Du. Ch.     100
• Me. Jo.     80
• Sh. Je.     100
• Ke. Wr.     500
• TOTAL     4,758

Below are the trip expenses.  I didn’t include anything like food or groceries or anything that we would have bought had we been at home.  I also didn’t include any “extra” stuff that we did that wasn’t necessary for ABR.  Also, the trip ended up being quite a bit more expensive then I had anticipated because we decided at the last minute for Tom to come with us after so many of you insisting it was crazy to go with just Samuel and I and offering to help pay for the extra costs.  I have to admit that you were all so very right!  So, we bought Tom a plane ticket at the last minute ($630) and we were unable to stay in the Ronald McDonald House due to a lack of rooms there (increasing our lodging costs by $460). 

Trip Expenses:

• Plane Ticket for Tom      633.99
• Rental Car     227.91
• Lodging     698.76
  • Days Inn for 2 nights and apartments in Montreal for 7 nights
• Gas     392.20
• Airport Parking    60.00
• ABR
  • Spring Session     1919.98
  • Towels/Supplies      177.31
  • Deposit     633.24
• Sit ‘n Stroll Stroller     240.36
  • Someone specifically donated money for the purchase of this stroller
• Bank/Exchange and Paypal Fees      74.57
• TOTAL     5,058.32

Keep in mind, though, that our Winter Session of ABR for this year has a heafty $625 down payment on it.  So, that will be nice.  And, I have saved $500 of the donations that will go towards our next trip for an ABR evaluation in August.  Also, I wanted to explain that we will now be doing 3 hours a day of ABR on Samuel for at least the next year.  We will need to go for evaluations with ABR 3 more times this year.  We will be able to go to California for 2 of them and then Montreal for 1.  But these will be shorter trainings (4 days) and I will start now on getting all the flight tickets donated again and making sure we get into the Ronald McDonald houses when we go.  I’ll be doing all I can to keep the costs down.  The second year, we will go twice for evaluations.  And the third year on, we will go once a year.  The reason for this is there are a lot more exercises to learn and they will start gearing the exercises more towards fitting Samuel’s specific needs.  Once we have had sufficient training, there will be less and less need for us to return.

So, that’s the gist of it all.  Sorry for the boring post, but I guess that’s what you get from an accountant who loves to keep track of where every dime went!  Thanks again to everyone for their help!  You were all extremely generous.  I just pray you receive 10 times the blessing back!

Love,

The Jewkes

Fun Facts Learned on our Trip to ABR

May 8, 2008 | Updates

Don’t trust the airline gate listed on your ticket because it is usually wrong.

Metal implants set off metal detectors.  Only stupid people don’t know that!

Some people are very nice and don’t request a seat change on a flight despite there being open seats up front and them realizing they have just been put next to a mom and her severly handicapped son.  THANK YOU to whoever was riding next to us our first leg to Hartford.

Diaper bags can appear much heavier than they really are and nearly pull a male airline steward to the ground when handed to them unexpectantly from a child’s mom.

NEVER take a trip far away without a GPS.  We missed our turn on the freeway in Salt Lake on the way back home because we didn’t have the GPS.  And that was in OUR territory! 

As we drove around Montreal, I liked reading some of the signs out loud practicing the tiny bit of French I remember from high school. At one point, I saw a sign that said “Mega Lotto” and I read it out loud. I was going to follow it with “Maybe we should try our luck at the lottery.” But Tom spoke up first and not having seen the sign totally misunderstood what it meant and commented by saying, “That must mean a whole freakin’ lot ‘o something!” Needless to say, we are from Utah.

The streets in Montreal are lined with parked cars because no one has garages or anywhere else to park. And the parked cars take up the far lanes on each side of the road. That drove Tom crazy as he couldn’t stand seeing an empty lane filled with parked cars. He figured he should be able to drive in that lane and did as often as he could – even if just for a few feet. At one point, we pulled into the right lane of a road to wait in line to turn into a grocery store. We were talking about something and after a time, I realized the cars in front of us were sure taking a long time to move. I looked ahead and then said, “Um, honey, I don’t think there is anyone in those cars.” Come to find out, we were sitting in line behind a bunch of parked cars waiting our turn to pull into the parking lot. Funny!

Everytime Tom asked for extra BBQ sauce, they brought him watered down gravy. And I can’t even tell you how funny it is to ask for fry sauce in Montreal or even New York. 

The convenience store across from our apartment was run by a China man with a very heavy Chinese accent who spoke to me in broken English and who lives in a completely French city. Talk about multicultural!

When we were in China Town in Montreal, we ate at a Chinese restaurant. They had French rap music playing over the speakers and the Chinese waiter spoke very fluent English with no Chinese accent at all. All in a French city. Crazy!

We accidentally found Le Village in Montreal, which is the gay community there. It only took a few moments for us to realize where we were. It was a strange feeling as we do not have much of that – at least out in the open – in Utah. But I have to say that we saw more gay couples in New York than we did in The Village in Montreal.

It costs $8 to drive over the bridge into New York City. It costs $5 to drive back out. Maybe we went a different way on the way back out, but I get the feeling they would rather you were headed out than in.

There is scaffolding everywhere in New York. Anyone know why that is? They use it for advertising there is so much of it. Strange.

Being in Montreal is more like being in France than Canada. And Samuel got a HUGE kiss from one of his therapists the moment she met him! I mean it was a hands-on-both-sides-of-his-head while squeezing his cheeks and planting a big kiss on his lips. I was also told by a French man that if any of our boys found French women, they would marry them instantly. After that kiss, I’m beginning to understand why!

If you’re ever in Montreal and you discover that your cashier or waiter doesn’t speak English, don’t fret. Most of them know the words Mastercard, Visa, Discover, No, Yes, Fries and Rootbeer. You can usually at least get something close to what you came for. Only once did Tom end up eating something that he had no idea what it was.

Oh, yea, just FYI, Walmart in Montreal doesn’t carry eggs, but they do carry pickled pig tongues. For real!

No one in Montreal has a dryer. (Well, our apartment did.) But EVERYONE has a clothesline going from their balconies to 10 stories up, it seems. And most of them use it.

Three floors up is a long ways when you have a wiggly kid in your arms.

If you park your car in Montreal on your first night there and then don’t keep track of where you parked, then when your wife sends you out to the car to gather up all the change because you have no Canadian money and they won’t take your credit card and you have to leave the waitress a tip, you won’t be able to find your car and you will be freaked out that someone stole your car in the 2 seconds you’ve been in the country. (Just ask Tom!)

Thanks again to everyone who has been supporting us in this endeavor.  We’ll keep you posted on the therapy and results! And always know that this little guy is SO WORTH IT!!!

Love,

The Jewkes

Trip to ABR - Day 10 Coming Home!

May 7, 2008 | Updates

Sunday, April 27th

Today we’re going home. It has been a good trip and we have learned a lot, but it has been a long one. And having Samuel anywhere away from home is difficult because there aren’t really any “safe” places to put him. I’ve already told you his small traumas with his car seat and the hardwood floor. But we got another example of it last night when I placed him on the bed in the hotel room and turned around about 2 feet from him to pack a bag. In an instant, he rolled over and off the bed and hit the top of his eye on the edge of the nightstand and then fell on the floor. It’s one of those things where the only thing out of my mouth was, “You have GOT to be kidding me!” Sometimes, I just wonder what else can happen. Not really, but you know what I mean. I could just do without some of this stuff sometimes. Anyway, his eye swelled up and of course, he wouldn’t let me put any ice on it. Needless to say, home is sounding better and better by the moment!

We got up early today to catch our flights. Tom’s flight left at 6:30 am and ours left at 8 am. Tom rode the shuttle bus to the airport and I dropped off the rental car and took a shuttle bus with Samuel from there. The shuttle driver was very helpful and loaded our bags and then unloaded them when we reached the airport. But for some reason, he dropped us off where there was no skycap and I had 5 bags and Samuel with me. I was sort of at a loss on what to do until I saw a wheelchair sitting just inside the doors of the building. I grabbed it and loaded it with bags. Then I pushed the wheelchair and pulled Samuel’s stroller to the ticket counter.

Once we were rid of the bags, we headed through the security checkpoint. This time, I was better prepared! I sent the computers with Tom and I had put all of Samuel’s meds in a plastic bag so I could just pull the bag out of the diaper bag to put through the scanner. I then warned everyone that Samuel had a metal implant and showed the security guard how to fold up the stroller BEFORE I took Samuel out of it. They then patted us down and here they were good to watch our stuff for us until we got back to it. They even helped me get Samuel back in his stroller. It went a lot smoother than the first time through.

We made our first flight and the flight attendants even gave us a bulkhead seat. Only problem was, when we went to get into the seats, Samuel’s carseat wouldn’t fit because the armrests on the bulkhead seats don’t go up. So, we had to take the seats behind. However, this plane was pretty empty, so we had a free seat next to us. And, it was early in the morning and Samuel hadn’t had much sleep, so he sat peacefully for the first half hour of the flight and then slept through the rest.

Our layover in Minneapolis was about 3 hours long, so I had time to eat lunch, use the bathroom, feed and change Samuel and then hold him on my lap for a while. And this time, I checked the gate number BEFORE walking to it. When we boarded this plane, it was a very small 50 seat plane and Samuel’s carseat/stroller wouldn’t fit down the aisle. It took some maneuvering on my part to get him down to aisle 9 where we sat, but it worked out fine. And in the end, the smaller plane meant that we didn’t have a 3rd seat next us.

Samuel watched a movie for about an hour and then got restless. Because there was no one next to us, I was able to put him on my lap and finally got him to sleep. He slept for the remainder of the flight. Once we landed, we got our luggage and met up with Tom. We then got our car and headed home. Samuel was upset for most of the ride home. He was simply tired of the whole traveling thing and as ready to get home as we were.

When we got home, it felt great! The kids all seemed to have grown a foot and it just felt so good to be with them again. A hot shower and a night in our own beds and we were back to work on Monday. It was a long trip, but in the end, SO VERY WORTH IT!

Thank you again to everyone who made this trip possible!  We are so excited to start his new therapy within the next few days.  Oh, and don’t miss tomorrow’s post.  It is my favorite one of the trip!

Love,

The Jewkes