Welcome to Holland

This was forwarded to me and I wanted to share- I think it explains everything perfectly!

WELCOME TO HOLLAND

By Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy . You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice . You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland ."

" Holland ?!?" you say. "What do you mean Holland ?? I signed up for Italy ! I'm supposed to be in Italy . All my life I've dreamed of going to Italy ."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy , less flashy than Italy . But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy , you may never be free to enjoy the very special, the very lovely things ... about Holland .

April 2011

I just realized the other day when Jackson turned 7 months, that I have not updated my blog in a long time! We have been pretty busy, so I will try to summarize all that has happened in these past months.

In December Brayden turned 2 and we celebrated the holidays with our family and friends. We also had many goodbye parties before our move. January we moved to California. It has been a pretty smooth transition. We got Ryan right into pre-school and Brayden right into therapy and Jackson has almost lived half his life in California now. Ryan LOVES school and has learned sooo much since we have been here. It's amazing! When we left NY he knew some of his letters and could not write any....Now he knows all his letters, can write them and can write his first and last name. He can draw stick people and colors pictures and is just doing great! Any free time, he chooses to sit and write- I LOVE it. He will ask how to spell words as he writes them and it is just a huge improvement.

Brayden has started OT, PT and Speech therapy here and is doing well. He seems to enjoy it a little more than he did. He definitely does not scream as much as he used to. He has transitioned well to CA and enjoys being outside a lot more. He has been laughing a lot more and seems to be happier overall.

Jackson is HUGE! He is doing much better eating. After changing formula a million times we have finally found the one that makes him feel good and tastes good to him. He loves his baby food and is gaining weight like a champ. He is sitting on his own and very nosey and interested in everything going on around him. You can see him soaking EVERYTHING in. He is a happy boy!

On a more serious note, Brayden is getting surgery done as I write this. This is the reason I have a few hours to update the blog. He has been throwing up a lot still, more than he has in a while. He is still slowly gaining weight but it has come to a point where we have tried all medications and all other options to stop the throwing up and it hasn't really helped. It isn't like a little baby spitting up anymore...he hates it. He cries and when it's bad, it comes up his nose and basically it is just horrible! We have decided with the doctor and surgeon's help to get a fundoplication. This is pretty much the tying off of his esophogus so it will now be a one way valve and nothing can come up it. He can not have acid reflux anymore, can not throw up anymore and not even burp.

It is extremely scary and something I never thought we would do but we have exhausted all other options at this point. So, hopefully this will help and make Brayden's life a better life! I will update you on the surgery and try to write more often. Hopefully I will get a chance to update soon.

Jackson Robert

38 weeks pregnant
39 weeks pregnant

Jackson Robert Moston arrived on September 7, 2010 at 10:31am. He weighed 7 lbs 14 oz and 20 3/4in. I went into labor at 2:30am and arrived at the hospital at 5:00 am 4 cm dilated. I received the epidural fairly quick and then felt nothing as Phil told me how huge my contractions were. I think it took about 12 minutes to push 2 or 3 times and he came out with no problems. He screamed right away and looked like a mix between Ryan and Brayden, but looked a little more like an "Allen".







Jackson is now 3 weeks old. So far, he is a good baby. He loves to eat and sleep and is very sweet. I am knocking on wood, as you should as you read this because I do not want to jinx myslef with how good he is. Ryan is inlove with him and loves to hold him and even feed him. Brayden LOVES him- he smiles at him whenever he sees him and grabs his arms and legs. I think the 3 boys will be great friends forever!

August Update

This has probably been the most stressful month of my life. That being said all the stressful events went well and there are some positive changes going on. 1st of all I had the doctor move his endoscopy closer because he was refusing to take his bottle (screaming and crying) and I could tell he was in pain. The endoscopy showed his stomach and esophagus were inflamed and the doctor says this is due to his acid reflux. As much as I don't want him to be in pain, I am so happy something came up so the doctors know I am not crazy and we know how to fix it. Unfortunately his only solution is to give him more medicine. I told him he can't keep the medicine down and we've already tried all different medications and different methods of giving them and we CAN'T KEEP THEM DOWN! Of course his only other option is to give the medication through feeding tubes. That's always the "other" option with the doctors which is why we decided to go to the feeding center in NJ.

Just 2 days after his endoscopy we got into the feeding center early also. Although it is a "Behavioral Eating Program" their philosophy is that behavioral issues usually stem from other issues. So the first plan of attack is to figure out the medical piece of why Brayden doesn't want to eat. We are slowly changing little things one by one. The first is adding different medications in his bottle like Mylanta (which we were already doing) and Miralax to try to get his pooping regular. We also changed the times we give his Prilosec. We were giving it to him right before his bottles in hopes we could stick the bottle in and he wouldn't throw up. They told us that this was really ineffective because the medication blocks acid production and if food gets in during this process it only produces more acid. So basically, they told us he had pretty much been going without any medication for as long as we had been trying to do that method. Looking back, that is when the real difficulty with the bottle began. So now we try to give him his medication 45min-1 hour before his feeding as well as giving him Zantac throughout the day. He throws up the Prilosec sometimes, but he can sometimes hold it down. He has slowly started to take the bottle again with a lot less fighting. Some bottles he still screams and cries but there are some that he takes them with no fussing- THANK GOD! So we are hopeful that he will get better and better!

Last, he had his eye surgery yesterday. The doctor said it went very well. He was extremely cranky when he woke up from the surgery but as soon as they unhooked him from all the equipment and IV and we were able to hold him like he likees to be held he was happy again. His eyes are very bloodshot (as expected) and he is happy and acting fine. Tomorrow he goes to the doctor to make sure they look good and he doesn't have to go back next week to correct them again. This is rare and would be horrible if he had to have another surgery so just hope and pray this is NOT the case! If all is well, we need to continue to keep and eye on him because it wouldn't be odd for him to need another surgery in a year or two because his eyes self corrected a bit and then point out a little. Then they would repeat the surgery and loosen the muscles a little bit. Here are some pics of Brayden before the surgery.

All in all, a very stressful month! Luckily the baby held out and has not made an appearance yet. He is due in less than 3 weeks so we will keep you posted on that.

Baby #3

Baby #3 is due in 3 1/2 weeks! We had a sonogram this week and he was estimated to weigh 7lbs 6oz!!! That is how much he supposedly weighs NOW! He is going to be a BIG baby. If that sonogram is correct he already weighs more than Brayden did at birth and 1 ounce less than Ryan did at birth. Ryan was 7lbs 7oz and Brayden was 6lbs 7oz so my guess is this baby will weigh 8lbs 7oz. Everything looked good. He is now head down and ready to come in the next few weeks. We got really lucky to get this sonogram picture and we both think he looks like Brayden but we will see soon what he looks like in person. Looking forward to meeting him!

August Plans

August is going to be a busy month! Brayden has had more trouble eating than usual and making life very stressful and frustrating. It has been about a month that he has been fighting every bottle and taking less and less in. We rely on his bottle to take in all his calories since his food intake is so minimal. The good news he is doing a little better with the food but the bad news is the bottle has been horrible. He has lost 9 ounces since his June doctors appointment. This has been a daily stress in our lives. I dread feeding him! We have decided to take him to a feeding center in New Jersey in hopes they will be able to help and figure out why eating is so difficult for him. He also has another endoscopy scheduled for the 19th and we are praying for some type of answer and solution for his stomach issues. He also has his eye surgery scheduled for the 24th. So as you see we are completely busy and stressed with Brayden's schedule. Of course there are the usual therapies, doctor appointments and normal life, as well.



We are also preparing for the arrival of our next baby. It's amazing how quick this pregnancy has gone and that we only have 5 1/2 weeks left. Oh pleeeeease, oh plllllleeeeease, be an easy baby that LOVES to eat and sleep. If you are reading this and putting in a prayer for Brayden, please add a prayer that the new baby will be so easy! I will post updates on this months events. Wish us luck!

California Vacation

We went on a family vacation to California to visit friends and family. We had a great, relaxing...well not really relaxing, but a fun time! We did a lot of swimming, went to San Diego, did a lot of mexican food eating, and the highlight of the trip was Disneyland!

The trip began by taking a very late and delayed flight. Ryan was so tired he threw up on the way to my parents house and Brayden woke up as soon as we got home. Mommy got to sleep at 5:30am NY time so the first day was a wash. The next few days we went swimming, spent time with family and had a BBQ to see the whole family and friends.

On Monday night, Ryan was feeling a little under the weather which was very sad because our Disneyland trip was planned for the next day. Luckily he wasn't too sick and we made it to Disney for an 18 hour day. It was Ryan's frist trip and it was so much fun and so wonderful to see him enjoy everything so much. Unfortunately I think it was a little much because the next day he was hoarse and coughing like crazy. It continued to get worse and he started wheezing the first night in SD which meant the full day in San Diego began with a trip to urgent care, a breathing treatment and antibiotics. He started to feel better immediately.

The rest of the trip wasmore fun at the beach,swimming and time with family. We had a wonderful trip!