Archive for April, 2008

Trip to ABR - Day 2

April 30, 2008 | Updates

Day 2 of our trip - Saturday, April 19th.

This morning, we began our drive to Montreal. We were able to make a quick stop at one of our business vendor’s facilities in New York, which was nice. The Canadian border patrol didn’t give us any hassle about passing through. And all went well. We had discovered just a few days before leaving home that we wouldn’t be able to stay at the Ronald McDonald House, so I had spent several days trying to find other options. We found that apartments rented for the week were much less expensive than getting a hotel room, so we had reserved an apartment online.

When we got to Montreal, our GPS would not take the apartment address as it did not recognize it. So, I contacted the woman renting us the apartment to get directions. It was then that I discovered why so many parents had suggested we would absolutely need a GPS. Although the woman I was speaking to spoke English, her native tongue was French and everytime she said a French street name, I had NO IDEA what she had just said. And no matter how many times she repeated it, I couldn’t possibly write the directions down because I couldn’t even understand the words! It was frustrating.

Amazingly enough, we were able to find the apartment. However, its condition was a big surprise. Montreal is pretty run down in many areas and there is graffiti everywhere. In addition, everyone lives in townhouses - only these are 3 story townhouses with an apartment on each floor, making the apartments very small. They don’t list things as 1 bedroom or 2 bedrooms. They list them as 1 ½ or 2 ½ rooms total! It’s very strange to see so many people living right on top of one another with literally no space between the buildings.

Anyway, our apartment was very small and very run down in a very run down part of Montreal. It was on the second floor with winding steps to the door. There were no doors on the bedroom and hardly room to set up Samuel’s portable crib. The towels, mattresses and sheets were old. There was only 1 window in the entire apartment and it was hot being upstairs. I was NOT happy and I was SO GLAD Tom was with us! I spoke with the woman renting the place and told her we only wanted to stay one night and would find a new place. She agreed, but charged me an extra cleaning fee which I happily paid as there was no way this was going to work for a week.

Finding a place for dinner was a whole different thing. Everything was in French! We used the GPS and found several places, but it was now so late, that nearly everything was closed. We finally found a small diner called Nickels and ate there. The food was OK, but the waitress didn’t always understand what we were saying as her English was limited. When we went to pay, our credit cards wouldn’t work. We tried 3 of them! We had no Canadian money and eventually they took our American money. I paid the poor waitress her tip in American change because the only other option was to leave her $20 because I had no change and they couldn’t give me any. She probably would’ve preferred nothing over the change. I’m not sure it’s worth the trip to the bank to change in $5 of American change!

When we got back to the apartment, I decided to use the one good thing there - the washer and dryer.  So, I threw everything I could find that needed washing into the old washer. An hour later, I discovered that all the washing machine did was fill up with water. It wouldn’t wash, it wouldn’t rinse, it wouldn’t spin or drain the water. So, we pulled the now soaking wet, still dirty clothes out one at a time and tried to squeeze the water out of them. I then ran them through 2 cycles in the dryer and they were STILL wet. Ugh! The internet there also wouldn’t work. I messed with it for over an hour and nothing. Things were not going well and by now it was REALLY late and I was extra unhappy!

That night, Samuel slept well. I didn’t. The mattress was 99% springs and 1% cover.  Don’t worry though, things started looking up later on.

More tomorrow…

Love,

The Jewkes

Trip to ABR - Day 1

April 29, 2008 | Updates

Today was the first day of our trip – Friday, April 18th. We had to be up early to be at the airport in time for our 8 am flights. I had received so many concerned phone calls and emails about Samuel and I making the trip alone, that we arranged things at Tom’s work so that he was able to go with us. That decision would prove to be a very good one several times during the trip, so I thank you all for your generosity because without your support, that would not have been possible.

We left the house together around 5 am for the 1 ½ hour trip to the airport. Once we arrived at the airport, we were able to check our bags at the skycap and then Tom went to park the car. In the meantime, Samuel and I got in the security check line knowing that we would probably have a hard time getting through and would need more time than Tom would.

I have not been through an airport security check for probably 15 years, so I was not sure what would come of it. We were put in a shorter line for strollers and the handicapped, so the wait was short. When we got to the checkpoint, I had to remove all my jewelry, watch, belt, shoes and cell phone and put them on the moving belt for the scanners. I then had to put my purse through, the diaper bag (after removing all of Samuel’s medication and formula and putting them in a separate bin) and my laptop computer and Tom’s laptop computer. Each computer also had to be in a separate bin from the bags to carry them. At that point, there were about 6 bins of my things floating down the moving belt.

Then, I had to remove Samuel from his stroller and while holding him, show the airport security how to fold it up so it would fit on the moving belt. Then he and I had to walk through the metal detector and, of course, we went off. We tried it again with no luck. So, they moved us aside and scanned me with a wand. They couldn’t find what was beeping, so they scanned me again. Still, nothing. Then they scanned Samuel. As they scanned his stomach, it hit me – he has a metal pump implanted in him! No wonder we were setting off the detector! (Kills me that I missed that!) After that, they let us through. I had to try and get Samuel back in his stroller while hoping no one ran off with anything out of my 6 bins STILL sitting unattended on the moving belt. It was really freaking me out as my cell phone and purse and all of Samuel’s seizure meds and our laptops and passports and money sat there with people walking by for about 15 minutes until I could get back to gather them all up. Why nothing disappeared from the pile, I will never know, but thank goodness it didn’t!

The first leg of the plane ride was difficult. Samuel was upset so I gave him some medication to calm him. He stayed awake for another hour and then finally fell asleep. Despite my pleas for a bulkhead seat for more room for his feet, we ended up on the very back row where our seats wouldn’t even lean back and there was no room for stretching out his legs. He does not understand that and would push his legs with all his might against the seat in from him while crying to get out of his chair. The biggest problem with that is he gets his feet in weird positions before he pushes and I’m so afraid he will break his ankle.

We made a connection in Minneapolis. Tom was not able to be on our same flight because we got his tickets so late, so Samuel and I had to make the connection ourselves. The airport had concourses A thru G with scores of gates in between them. We got off at a G concourse and were given tickets that indicated we needed to go to gate A4 (pretty much as far away as possible). And, the airport tram was down. So, I started walking pushing Samuel in his carseat/stroller and carrying our 40 lb. diaper bag. This is the bag that when I handed it to our first male flight attendant who offered to carry it, he literally lost his balance and almost fell over because it surprised him how heavy it was!

Twenty-five minutes later, we reached gate A4. But, the flight information at the gate looked wrong so I asked if we were in the right place. They said the gate had been changed to gate C4. I nearly passed out. Who does that?! So, back we went the other way. When I finally got to that gate, I pleaded for a bulkhead seat. They said we were too late to request one. Aaaaauuuuurrrgggghhh! So, I asked how long I had until boarding…12 minutes. What?! I found a bathroom, grabbed a snickers bar for lunch and on the plane we went.

This plane was a bit larger and although we were again on the back row, this time, the seats leaned back and there was more leg room and they had moved the person next to us so we had an empty seat for more room. That proved to be invaluable at the end of the flight. Samuel slept for the first little while and then woke up. After a while, he grew impatient and finally started to get upset. I was able to take him out of his seat and lay him across my lap because of the extra seat next to us. He was soaking wet as I had not had time to change his diaper in between flights. I had to change his diaper and clothes in the seats on the plane, but it worked out at least.

When we arrived in Hartford, we met up with Tom and went to get our rental car. After haggling with the lady at the counter about trying to double the price of the car simply because I wanted to add Tom as a driver, we finally chose a car and went to the hotel. The hotel turned out to be very nice and was a really good price. We then found a place to eat. Samuel was not happy and I put him across my lap while I ate my dinner. He eventually fell asleep at the restaurant and slept well that night.

It was a long first day, but we were happy to have at least made it halfway to our final destination!

I’ll post more tomorrow.

Love,
The Jewkes

THANK YOU!!!

April 28, 2008 | Updates

I have A LOT to post and write about, but I am going to have to do it in segments over the next few days.  However, the first thing I want to do is thank all of you for your support in attaining ABR for Samuel.  Many of you donated money to help with the cost of the therapy and those of you that could not, donated your prayers or time.  And some of you donated all of the above!  I am so thankful for all three.  I can tell you that the past few weeks have been filled with a lot of tears on my part.  I am not very easily moved to tears, but each time I received an email indicating we had received a donation or a check in the mail or a phone call from someone wanting to pitch in, I was moved to tears.  I was also moved by those willing to dedicate time to watch the children left at home or to help cover our hours at work.  Everyone was so willing to be a part of it all.  I cannot even explain the feeling of receiving such devotion and charity from so many who I know very well struggle with trials of their own and had to dig deep to find the time or money to dedicate to our endeavor.  I believe there are few things more humbling than seeing your family, friends, neighbors and even those who you don’t even know give whatever they have to offer.  I am humbled and thankful beyond words.  And I pray that God will bless each one of you a hundred fold for the things you have done for us.  There is NO WAY we could do this for Samuel without your help.  Thank you so very, very much!

With that, I also want to announce that we arrived home from Canada yesterday.  For safety reasons, I was leary to post about the exact dates of our trip as this is a public website, so I hope none of you will be too upset that I saved the posts about our trip to put on the website after we returned.  I can tell you that the trip was incredible and difficult and interesting and tiring all at the same time, but we are SO GLAD we went.  And I have many posts to put here that I will put up over the next few days (keeping you from having to read an entire novel in one day :)!  So, I hope you enjoy them and I will also include at the end a list of the funds we raised and how they were used to pay for the trip.  I want you to know that we were very careful with all that we spent and that we used your donations to benefit our little guy.

Again, thank you SO VERY MUCH for all of your support!  We are excited for this new therapy!  We think it will bring great things to Samuel.  But we never could have done it without all of you!

Thank you,

The Jewkes

P.S.  Here’s a quick picture of Samuel on our trip.  There will be more in the next few days!

Help Samuel get ABR Therapy!

April 5, 2008 | Updates

Ok, we have big news and need your help if you can. There is a therapy developed in Canada that I have been wanting to take Samuel to for over a year. It is a therapy that will help rebuild the facia surrounding his interal organs and in turn rebuild his trunk muscles and strength them so he can eventually sit up independently. It also helps the child gain individual control over each of their limbs. At the current time, Samuel is not making any progress towards ever being able to sit up unsupported. And there is really nothing besides this therapy or possibly stem cells that can help him in that regard. But the cost of the therapy has made it unattainable for us considering insurance won’t pay for it and it requires us to fly to Connecticut and then drive quite a ways to the therapy center from there in order to receive the treatment.  If you want to read more about the therapy, go to www.abrcanada.com.

Well, after a lot of research and work, I was able to get the flight tickets donated to us. So, now we just have to pay for the therapy (approx. $2,000), a rental car, a place to stay for 9 days and gas. I have found a Ronald McDonald house that we can most likely stay at for $10 a night and we can cover the rental car and gas. But we could use help on the $2,000 for therapy if anyone is willing. I hate asking for donations, but at the same time, this is something that could really benefit Samuel, so I am biting the bullet and doing so.

I’ve added a few things to the site in case anyone is interested in helping fund the ABR treatments. We have been very careful with the funds that were raised for Samuel in the past and have been able to do some great things for him. But those funds are pretty well gone at this point. So, if you feel so inclined, you can either donate money by clicking on the Chip In link below or at the left of each page or you can buy a candle or some bracelets. The candles are really high quality and smell great. The bracelets are cute. I’ll get whatever you order to you as quick as I can. And thanks so much for any support you decide to give.

To donate by paypal or credit card, click on the Chip In link below. To donate by mail, send checks to PO Box 319 in Paradise, Utah 84328. To see what fundraising items we have for sale, click here.  All the funds will go into an account to be used solely for Samuel’s therapy.  I can’t put the account in Samuel’s name or it will affect his eligibility for Medicaid.  That is why the account is in my name.  Just so you know.  Thanks for your support.

Love,

The Jewkes

P.S. For our regular weekly post, continue reading below.

Feeling better and off on an adventure.

Updates

Well, we’re feeling better.  By last Saturday, I couldn’t stand being in the house anymore and wasn’t sick to my stomach anymore, so we headed to see Horton Hears a Who - Weston, Ben, Samuel, Nathan and I.  Everyone was good except for Samuel.  He just could not hold still.  He kept up that crazy wiggly mood until the next Wednesday morning.  I need to video tape it one day when he’s like that because it’s hard to explain.  He is just off the wall wiggly - arms flying, legs flying, rolling, swinging eveything.  Pretty much he could knock any of us out with one just one flying limb and he has four!  Here’s to hoping there is a lot of progress before he’s a teenager or he will knock us out!

The rest of the week, Samuel has been back to his normal self.  I don’t know if it was the flu that he had or if it was just the tail end of his head cold.  I’m guessing the flu.  He sat with me one night and I had to hang on for dear life to get him to hold still.  But within a few minutes, he was sound asleep.  I know he just didn’t feel right.  And when his teacher at school asked Ben how Samuel was, Ben said something like, “He has a fever and he is crazy wiggly!”  Samuel’s teacher said his eyes got huge as he said it.  Well, I guess that’s about the best explanation I’ve heard.

The big news is it looks like we are FINALLY going to ABR therapy.  It’s a therapy that requires us to be there for about 9 days while they teach us the techniques and then we will come home and do the therapy with Samuel ourselves each day.  I’m excited to see how it helps him.   I’ve been researching it for over a year and parents are seeing good results with their kids.  But it is going to make for quite the adventure for us.  We will have to fly clear across the United States.  So, it will be an 6 hour flight each way with the layovers and all.  And then we will have to drive to the therapy from there.  We will stay for 9 days and head back.  The difficult thing, though, is that the trip will be just Samuel and I.  I would love to take someone else, but the cost of the flight would just be too much and I think we can manage on our own. 

Oh, yea, that reminds me that they are opening up a hyperbaric clinic this month in Logan.  And it is a clinic that will take brain injured children.  How awesome is that?  The down side (and it’s a pretty big down side) is that each treatment will be $225 for self-pay clients.  That’s not feasible for us.  But I’m hoping we can get our insurance to pay for them.  It’s a really long shot, but at this point it’s worth it.  We have seen so many good changes in Samuel from hyperbarics, that we would love to do more treatments.  Hopefully, our insurance will agree.  But I am absolutely certain it won’t come without a fight.

So, that’s the gist of things for now.  We’ll be busy the next several weeks preparing for the trip.  I’ll keep you updated as much as I can. I’m leaving you with a picture of Samuel on Easter and one of Nathan sharing kisses. Enjoy!

Love,

The Jewkes