Family Vacation

Family Vacation

Tuesday, July 26, 2011

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 ;)

Saturday, July 16, 2011

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...

Wednesday, July 6, 2011

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

Tuesday, July 5, 2011

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.