Vacation

We are home from the vacation that wasn't. I'll start my story at the beginning...

We left for Cape Cod on Monday morning, the drive was good. We got to the house we were renting around 1 and started to unpack and unload the cars. We also went grocery shopping to get ready for the rest of the week. Then we met some family at the beach for a night-time concert. It was a good day, as good as a day can be spending it traveling.

Tuesday we went to Provincetown to take Nathan whale watching, he was VERY excited to go on a big boat and see whales. While we were walking around I noticed Trevor was cranky and felt warm, I figured he was getting more teeth. I gave him tylenol and we got on the boat. I was a little nervous since I usually get seasick but this time I was fine. Trevor was very fussy and whined for a while until he finally fell asleep. We saw tons of whales and Nathan was thrilled to pieces to see a whale jump out of the water! He told anyone who would listen that the whale jumped out of the water, he was so happy. Then it was time to go back to the harbor and it started to sprinkle so we all went inside the boat. Trevor was sound asleep in the carrier but was like a furnace on my chest. He slept most of the way in until we were about 15 minutes out then he woke up cranky! He cried and cried until I got up, I started to walk around with him and then a woman says to me "he's throwing up on you" I looked down and Trevor had gotten sick all over. Katherine and I took him outside and stripped him down to get out of the puke clothes, I took my sweatshirt off since that was also dirty and then we wrapped Trevor in my sister's sweatshirt. By this time he was burning up but we couldn't do much for him. When we got to shore we gave him more tylenol and walked to the car. We drove home (a 45 minute drive) and then checked his temperature, it was 105.7. Katherine and I took him to the ER, after Ginny went to the neighbor's house to find out where the hospital was. We spent 6 hours in the hospital with Trevee. They put an IV in him, did bloodwork, urine tests and an x-ray. Everything came back normal so they sent him home with a prescription for "just in case" antibiotics and called it a viral illness.

Trevor was sick until the day we left. He got tylenol every 4 hours all week just to kepe his temp under control. He slept all day every day. He drank apple juice and ate nothing. I watched a lot of TV.

Nathan had a great time with his Aunt Lisa, Aunt Katherine, Aunt Trisha, Ginny, and of course Mimi. They all went to the beach where he got to catch hermit crabs. They went mini golfing, it was pirate mini golf and he still talks about how fun it was. He went into the ocean to kick water at Aunt Lisa and scare her. He had so much fun. He told me he wants to go back to the beach again. He cried when we left, he wanted to go to the beach again.

Finally on our last day Trevor was feeling better so Trevor, Nathan, Aunt Trisha, Aunt Lisa and myself all went to the go-karts. It was going to be fun since Trevor could go on with everyone else. We paid for our ride and then stood in line. We were surrounded on every side by people since it's a fun attraction. Then I hear Lisa say "it just came out" I look over and I see Nathan holding his shirt and starting to panic, his feeding tube had come out and he was scared. Aunt Trisha took Trevor from me and I went to the car to get the syringe to deflate the balloon so I could put the tube back in. Much to my horror I didn't have the syringe with me, I didn't have one at all. That only meant one thing: ambulance. We needed to get the tube back in and that was the only way I could think of. So I asked the woman who worked at the go-kart place to call me an ambulance and explained to her what was going on. She called and then people came. We took Nathan out of line, took his shirt off and used that to stop the bile from coming out the hole and then went to a little seating area to sit down. We sat down and then a police car came, 1 cop was inside. He made sure we weren't in an emergency and then called the ambulance and told them to keep coming. Then the ambulance arrived, with lights and sirens. Nathan was thrilled with the lights and sirens! Then it happened, not 1 not 2 and not even 3 paramedics came out, there were 5 of them, 5 paramedics surrounded us to reinsert a feeding tube. I told them what I needed, they gave it to me and the tube was put back in. Then Nathan panicked that he wasn't going to go on the go-karts and he was going to go in the ambulance. We assured him he was going to get to go in the go-karts and walked back over to wait in line. The whole incident happened so fast that the same people who were behind us (and witnessed the incident) were now in the front of the line. They all let Nathan go ahead of them, it was so nice.

The woman who worked there let Nathan go on twice since he was so brave! It was so nice to see people who were so sweet to him after his little incident.

So our vacation didn't exactly go as planned. Trevor and I never even made it to the beach, oh well there's always next year.

Pictures to come later. I didn't take any since I wasn't involved in any of the fun!

Of Course

Just thought I'd let you all know that we are leaving for Cape Cod tomorrow morning, so of course that means Nathan now has a fever and says he doesn't feel good. His trach still isn't producing green mucous but I'm bure that isn't far off considering the amount of stuff coming out. Of course he gets sick before we leave for vacation, he'd hate to go away and feel good.

In good news he's now a talking maniac. He can say so many words I can't believe it. Mostly when he speaks a work he will say the vowel sounds for the word, for instance Lisa has become "eeuuhh" but he can say some other consonant sounds, he now calls Grame "mee mee" so she's changed her name to MiMi to acomodate his speach. Sign is still his easier form of communication and when he is speaking a word I don't understand I'll ask him to sign it, and he still signs 98% of the time, but he is saying more now than he was a week ago and that's amazing!

Trevor has decided he's ready to walk. Yesterday Lisa dropped the boys off at my house and stayed so she could watch them while I worked. So we were all hanging out in the living room, Lisa was supervising the boys I was getting ready to throw my phone out the window from frustration and then Trevor just walked across the living room as if he's been doing it forever. Then he turned around and walked back to me, then laughed hysterically.

OK, I'll post pictures once we're back. No internet access while we are there!

Getting Ready

As I write this I shold be getting things ready to go to Cape Cod in a few days but I'm not. I have the big things packed but nothing that any other person would ever even need. I have sterile water, trach ties, HME's, saline ampules, an extra trach, suction catheters...  No clothes yet though, they will be packed this weekend right after I do laundry.

The boys are both doing great. Nathan is in his last week of summer program for preschool. His graduation in next week but we are going to miss it because of vacation. Trevor has started walking a little, he will take a couple steps and then fall down and crawl, crawling is faster for him right now so he likes it better.

Nothing has been going on so I haven't updated much. I have been working a lot to try to compensate for the week I'll be in Cape Cod and the month or so I will be in Boston. We leave for Cape Cod on Monday, Nathan's pretty excited to drive in Grame's car the whole way there. That will leave just Lisa and I in my car with Trevor. Hopefully he'll be good, I plan on bringing snacks to ensure his good behavior.

We've started talking to Nathan a little about his surgery. He knows that we're going to go see the doctor who is going to help him take a nap and while he's napping he is going to get his trach out. He doesn't know much more than that but he's 3 and doesn't need to know much more than that right now. As we get closer to surgery we'll talk with him more about what's going to happen but for right now he doesn't need to worry about it.


Here are a couple pictures of the boys from when we went to visit Matt's parents while they were camping. They both loved the camper and Nathan decided we're going camping next year with Grandma and Grandpa!

Nothing New

Did you miss me while I wasn't updating? It's been a while because I've been pretty busy between work, the kids and managing to go to the gym most days.

The kids are great. Chubbo still won't walk, I think he's too fat and he loves to crawl. For now crawling is quicker and more familiar to him so he doesn't see a need to move around any other way. The doctor never called with bloodwork results which means it was fine. Also he never called with any suggestions after we faxed in the 3 day diet history we did, so he must also be eating OK too. Nathan is in preschool all summer and is having a great time. They are doing things more like a summer camp than school and he's having a ton of fun. He started eating applesauce at snack time and yogurt at lunch time - I know it doesn't sound like a big deal to most of you but it's huge for him.

We are now less than a month out from surgery and I'm starting to get nervous. I won't get into all of how I'm feeling but just know I'm not as relaxed about it as I may seem. Sending my 3 year old in for his 14th surgery isn't easy.

Matt and I joined a gym recently. The first few times I went I brought Trevor and dropped him off at their daycare and then attempted to work out, Nathan was at school. Trevor thought it was completley unacceptable that he wasn't in contact with mommy during those few minutes and screamed until they came to get me. As I was walking down the stairs towards the daycare area I could hear him, there were tons of people trying to make him happy but he just wanted me. Then I dropped him off the next day and the same thing happened. So now I drop him off at home with Daddy and then go to the gym alone. Really, I talked Lisa (my sister) into joining the gym with me so we go together most days. It's nice to have someone to go with, and it holds me accountable and makes me go more often. Lisa and I met with a trainer for a fitness evaluation (she won!) and an orientation to all the weight machines. He set us up with an exercise program and after the first time we did it I could barely walk, my c-section was less painful than the day following the workout! But it's getting better as my muscles remember they aren't just there to look pretty (he he he).

That's about all for us. The boys and I are going to Cape Cod in the beginning of August with my mom, sister, aunt trisha, aunt katherine and cousin ginny. It should be a great time and I'm looking forward to some relaxation on the beach before the stress of surgery. We are planning on going whale watching while we are there so Nathan should love that. Hopefully no one falls overboard ;)

What I wish you knew

Here are some things I wish I could tell people when they meet us:

When Nathan was born it was supposed to be the happiest day of our life but it wasn't, it was the scariest. Nathan was 38 weeks when he was born but was sick and we knew it, we knew he was going to have to fight. He was in the hospital for 20 weeks before he came home, he was home for 3 weeks before he went back to the hospital. His first year of life was spent mostly in the hospital. We saw the nurses in the hospital more than we saw our family. Most of the time there was someone better qualified to care for our son than we were.

Don't stare at Nathan's trach, it's how he breathes. Don't ask me when he will no longer need it, when was the last time you survived without breathing. Don't treat him differently than you would treat any other child, he breathes different and that's it. Don't talk about him in front of us, he has a breathing issue not a hearing issue. Don't reprimand your child for asking questions, I don't mind answering your questions. Don't ask me what I did to cause this, it's mean and hurtful no matter how sincere you were being.

If you don't understand what he's signing to you, ask me, I would rather you ask me and can communicate with him than ignore him. If you have questions about his trach ask me in a nice way, I have no problem sharing but don't make him feel bad for something that isn't his fault. If you are nervous to let you children play with him that's fine, but he's just like any other kid and most times he can handle it. If you see him get 1/2 red it's just nerve damage don't laugh at him it's not his fault, we don't laugh at you for things that aren't your fault.

His stamina isn't great because of the trach, not because there is something wrong with him. He loves to play with other kids and gets sad when they don't want to play with him. He is old enough to see that he is being treated differently. He is just like any other 3 year old, he loves fire trucks and the movie Cars. He loves to run and jump and play. He is imaginative and playful, he loves to read and color. He is good to his little brother and loves to help.

If I'm short with you and seem like I'm on edge it means there is something going on with Nathan. I don't always want to talk about it, so don't push. All things Nathan are hard for me to talk about sometimes, I still feel guilty for his birth defect and that isn't going to change. Don't try to talk me out of it, it's annoying and useless. I've had many great doctors tell me it wasn't my fault and that doesn't matter to me, the guilt remains.

Please know that while you can make plans for your children a few months in advance and know you will be able to stick to them, I don't have that luxury. We make plans a few days in advance based on Nathan's health, we can't predict how his health will be in a few months. I'm not going to leave my sick son in the hospital so I can do something else (I did that once and regret it). When Nathan is sick I drop everything, and that may just be plans I have with friends. It's nothing personal it's just my life.

I could go on and on. I wish people just knew how to act but they don't...

The Verdict Is In

Today I took Trevor to the pediatrician for a weight check. As you may remember when we took him for his 1 year well-baby visit and the Dr. decided that Trevor was too little. Today we got the final verdict, he's still too little. He's even smaller than he was last time we were there. His height is in the 10th percentile and last time his weight was in the 5th percentile, this time his weight was below the 3rd percentile. So we went to the hospital after the pediatrician for some bloodwork.

All babies have bloodwork at 1 year old to check their lead level, Trevor had that done and some additional stuff. The doctor diagnosed Trevor with Failure to Thrive, but he said he thinks Trevor is just eating too many fruits and vegetables. Too many foods that have very few calories are leaving him too skinny, wish I had that problem! We also have to do a 3 day diet history with him, so for 3 days we have to keep perfect track of everything that goes into his mouth and then send it to the pediatrician. They will evaluate it and then send it to a nutritionist who will tell us what changes to make to help him gain weight.

Here is a picture of what failure to thrive apparently looks like

Good Weekend

This weekend was a great one! The boys and I spent the weekend at my parents house traveling to a lake each day. On Saturday we went to Hedges lake for a little while with the boys, they had a great time. Nathan loved playing in the sand with my cousin Jake and Trevor enjoyed being held and dipping his toes in the water.

Sunday we went to our first 4th of July party at my aunt's house on Crooked Lake. The boys, again, had a great time. Trevor and I ate way to much great food and Nathan played all day. The weather wasn't as great as I wish it would have been but we all still had a wonderful time. Nathan really loved knowing that even when we left we were going to Grame and Geege's house, way better than going home!

Monday was the best day of the weekend. The weather was great, sunny and warm all day. Trevor changed into his bathing suit as soon as we got to the lake (Crooked Lake again, another aunt's house) and didn't get out of it until it was dark out. The water was a little cool when he first got in and he whined a little but once he got used to it he loved swimming. He also loved crawling around in the dirt, he was covered in sand all day. Nathan also played in the sand all day, but he didn't go into the water at all. Nathan got to drive a boat a little and he had all 4 of his grandparents there with him - his ideal day!

We were surrounded by aunts, uncles and cousins who entertained both boys all day. Trevor could con all of them into feeding him all day and Nathan had them all playing with him. It's so nice to be around people who love my boys so much, and they love all the attention.

Once it was dark out Matt and Brendan did some fireworks for us. Most of us really enjoyed them but Nathan had a hard time with the sound. My Dad took Nathan into the camp and closed all the windows and doors so they were as quiet as possible. Once fireworks were over Matt took the boys home and put them to bed. Nathan had to get up early today for preschool, he is enrolled in their summer program so he doesn't lose to much ground with his therapy. Trevor slept a little late today, until 9, since he's been going to bed late this weekend. He's been sleeping a lot today cathing up on his sleep.

Since the 25th has passed it's less than 2 months until surgery. Hard to believe that in 51 days Nathan will go in for his 13th surgery and he's only 3. I know all of you are *sure* it's going to work but please forgive Matt and I if you talk to us and we're less than optimistic, we are trying not to get our hopes up. We're being realistic, 1/2 of these surgeries fail and we're trying to be prepared to be in the 50% who leave the hospital still with a trach.