Makes me think

Today was an overall fun day for us. I had to work in the morning so that part wasn't so great for the boys but their day got better. Once I got home and they got up from their naps the fun began. I fed both boys dinner (Nathan asked for yogurt!!) and then I told them we were going on a suprise adventure. Nathan was so excited.

We were leaving out the back door. First he ran over to me with his backpack, unsure if he needed it or not - he did not. So he ran to the front door to put it back on it's hook and then ran back to me. Then he asked if he needed his sneakers, he did not, sandals would be just fine. So he jumped into the back porch and put them on. Then we were off.

Once we were all strapped into our appropriate seats Trevor sucked his thumb and talked to his feet and Nathan begas asking where we were going. Since I wasn't telling him where we were going he guessed and his guesses made me think. First he guessed the doctor, he was relieved we weren't going there. Then he guessed school - he was also a little relieved it wans't school. It was his third guess that made me a little sad - the hospital. That just shows how much time we spend there, way to much time. He was thrilled when he realized we were going to Hoffmans!Once we got there he had a great time riding all the rides. It wasn't as exciting for Trevor who is still too little to ride anything good. Nathan also asked to go on the carousel but he's to little to go alone and I can't take them both so we had to skip it. He was a little disappointed but was comforted by another ride on the train.

Tomorrow Matt and I are taking Nathan to go see Cars 2 while Grandpa watches Trevor. I can't wait to see how excited he is to see his first movie theater movie!

...there's the other shoe dropping

Just when I thought Nathan was getting better, he's sick again. At least this time it isn't diarrhea but he does still have it. He's got thick green stuff coming out of his trach so it was off to the pediatrician today. It was also bad timing since today was supposed to be his last day of preschool. Oh well, he starts summer program in 2 weeks so he didn't really need to say goodbye to anyone.

The pediatrician called me while Nathan was there since Grandpa took him, Matt and I were both working and doing a tag-team with Trevor. Dr. said that it's tracheitis, we caught it before it got bad and turned itself into pneumonia, thank god. He's on an antibiotic, a steroid, a nebulizer antibiotic and a different nebulizer medicine that will help dry out his lungs. It should help him in a few days.

Trevor is also sick. Poor kid is losing his voice, he can barely cry sometimes. At times he reminds me of Nathan when he was little, making the cry face and I can tell he's really mad but there is hardly any sound (really he's a lot louder than Nathan ever was but it brings me back). So hopefully in a few days our house will return to normal health. One good thing is that this is Trevor's first illness ever, score one for breastfeeding for 6 months. Imagine if I had been able to do it longer!!

Tomorrow the boys are going to Grame and Geege's house for the night and then Sunday they are being handed over to the care of Grandma and Grandpa. Mommy and Daddy both have to work all weekend, I'm working 12 hours on Sunday! They will love their night away and getting to spend so much time with their grandparents. They will be fully spoiled on Monday I'm sure. Oh well, that's what grandparents are for - no rules just fun fun fun!

Pictures

We had Trevor's one year old pictures taken the other day. A woman who works with my mom, Lessa, took them and they turned out beautiful. She took them outside on the campus of RPI and they turned out great! I love all of them, it's going to take me a while to decide which ones to print. Way better than going to JCPennys.

Today Nathan had a fun day at school, there was a bouncy bounce, pony rides, sno cones, cotton candy, and a petting zoo. The preschool they integrate with had their graduation yesterday and today was their family fun day, they invited Nathan's class to join them. Nathan's nurse texted me a picture of him on a pony, he was having a great time. I told his nurse about his scary incident from the other night with the bouncy maze at the baseball game so she would understand why he might get upset at the bouncy bounce, but he did fine and loved it.

After Nathan got home from school he decided he wasn't tired so I took both boys for a walk at the park down the street from our house. I put them both into the double stroller and we all had a great time. Nathan pointed out all the different things he saw and Trevor relaxed and sucked his thumb the whole time, it was very nice.

Once we were too hot to keep walking we came home and played inside for a little while. I'm always afraid that since Nathan only sweats on 1/2 his body he will overheat easily so when it gets really hot like today was I tend to try to keep him inside and cool. Since Nathan didn't take a nap and Trevor still isn't feeling great (I now think he's teething) they were both ready for bed early, bonus for mommy!

Here are a few pictures of the boys! The first one is Nathan on the pony, the rest are Trevor's one year pictures

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Father's Day

I hope all of you had a wonderful Father's Day celebrating the important Father's in your life, we sure did. We started the morning with a visit to my parent's house, the boys had spent the night there. We had a great breakfast with my parents and sister. Then it was time to take the boys home for naps.

After their naps we went to a Valley Cats baseball game. I was a little worried that the boys were going to get bored and antsy and we'd have to leave early. Nathan had a great time but Trevor did get a little antsy. When we first got there Nathan caught a glimpse of their mascot Southpaw and was shaking he was so scared. So I picked him up and carried him into the giftshop, we told him he could get a souvenier. So we bought him a new hat and we bought Trevor a little stuffed animal that he loved to try to eat. Then we went to our seats and watched the players warm up. After that Grandma and Grandpa joined us and Nathan was thrilled to see them. Then we walked over to the kids play area and bought tickets so Nathan could go into the bouncy maze and play games. At one point Matt lost sight of him and walked back to me thinking we would just wait for him at the end. I knew it had been too long so I went around the back and looked for him, he was sobbing and just standing there. There was a guy working so I told him Nathan needed to come out and he helped me get Nathan out. Once Nathan was safely in my arms he hugged me and stopped crying. Then he told me he fell and was scared, poor kid. So he didn't want to use the rest of his tickets, too scary, so we left - still with all our tickets. I gave them to a guy walking in with 3 kids, he was very appreciative of the free tickets.

Then we watched the baseball game for a while. Nathan had a great time sitting with grandma and grandpa and clapping whenever everyone else did. We did the wave a few times and he loved that! Then Trevor started to get a little tired and antsy. The real problem was the people behind us were eating popcorn and not sharing with Trevor and he didn't like that! So Matt and I took turns walking around with him. Then we decided to leave a little early. We went home and put the kids to bed then the adults sat outside and made s'mores by the fire. It was a great ending to a great day.

Not So Chubby

As you all know I call Trevor Chubby. I call him that because I truly think he is just that, chubby, and I love it. I have nothing to compare him to. Nathan wasn't on the growth charts for YEARS after he was born. He was born in the 50% for weight and quickly fell off them. He didn't get back on the charts until he was almost 3 and he's been slowly climbing ever since. Trevor was always right around the 50%, until today.

We took both boys to the pediatrician, Nathan for a hospital follow-up and Trevor for his 1 year well-baby visit. Nathan is doing wonderful - weighs 27lbs. Trevor isn't doing as great in the weight department. He has only gained 6ozs. since 4 months ago and is an inch longer. The length is fine but he fell from the 50% to not even the 5% mark, a big decrease. I think it's because he LOVES fruits and vegetables and fills up on them at each meal, he eats less of the "fatty" stuff. The doctor agreed, he is probably just filling up on stuff that is good for him but isn't helping with weight gain. He needs to gain weight. We have to take him back in 3 weeks to get him weighed and he needs to have gained some weight by then.

To facilitate weight gain we are giving him pediasure each day. Today was the first day of it and he seemed to like it a little. We are also feeding him as much as he wants. He does love his fruits though and they don't have many calories in them. Too bad he doesn't have a feeding tube, then I could give him whatever we needed to without regard for what he would like (just kidding, sort of). The doctor isn't worried at all, he doesn't think there is anything wrong with Trevor. He just wants him to be as healthy as possible. At 1 year all kids have routine bloodwork done to check their lead level and to check for anemia, we have to wait a while. The doctor wants to wait until we go back to see him to get the bloodwork done. If Trevor hasn't gained any weight he is going to order some more bloodwork so if we wait he will only get stuck once.

I always thought Trevor was chubby and compared to what Nathan was like at the same age, he is. Nathan was so so so little at the same age. I guess Trevor should just be more chubby than he already is. Since he is still so little we have to keep him backwards for a while longer in his carseat which is really no big deal. The only reason I want to turn around his carseat is for a weird reason. Nathan's seat is behind the driver and Trevor's is behind the passenger. Since Trevor is backwards the passenger seat has to be very far forward and straight up, not so comfortable. He doesn't fit behind the driver since Matt wouldn't be able to ever drive the car. Nathan signs and it's impossible to see him when you are driving. I want to be able to talk to him while we are alone in the car but I can't see what he's saying to me. Once we can turn Trevor around Nathan can sit behind the passenger and Trevor can sit behind the driver. Then I will be able to see Nathan and talk to him when we're alone in the car.

OK, I hear the dryer beeping at me. Where does all the laundry come from? I swear people are droping it off at my house, there is no way 4 people can make this much laundry.

Trevor is One

On Saturday we celebrated Trevor's first birthday with a big party for him. We didn't invite all that many people but when we had everyone cramed into our house it seemed like there were tons of people here. We all had a great time, especially Trevor. The house was full of friends and family who all overdid it with the gifts (which I'm still putting away) but we are very grateful to have gotten all those wonderful new toys. Nathan doesn't realize they aren't all for him, he loves them just as much as Trevor does.

Trevor had the best time with his birthday cake. It was a Mickey Mouse party so of course there was a Mickey Mouse cake. I baked the cake and Matt decorated it, it looked amazing. We put the whole cake in front of Trevor and he had a blast! He dug right in as if he's been eating entire cakes his whole life. At one point he even put his mouth down to the cake and bit a piece off - he's such a pro! We did take it away from him once he had some. We didn't want him to overdo it, especially since he'd already thrown up a little from eating too much.

Nathan was Trevor's big helper and helped open all the gifts. Thankfully Trevor is still too little to open anything himself so Nathan had a wonderful time. Trevor wasn't all that interested, he just wanted to crawl around and look for food crumbs on the floor. Trevor got a ton of new toys, one was a drum filled with all different instruments. Nathan took that toy over to Geege who opened it up and formed a band with all the kids, the toy was a hit. Nathan picked the trumpet and tried to play it, he couldn't do it since he doesn't exhale through his mouth. One other little boy 'A' noticed that and handed Nathan a different instrument and gave Nathan that to use. It was so sweet to see A switch with Nathan so that Nathan could also make noise with the band.

One of my fears for Nathan has always been that other kids will alienate him because he's different and for the most part that is true. Most kids won't play with him because he signs and looks different and it's heartbreaking for me. A is the son of great friends of ours and it only a year older than Nathan. He's always been great with him, I love seeing the two of them play. A was the first kid to even ask Nathan to go play with him, I love that kid (and his parents too)!

Now after that sidenote, after all the kids went to bed we played games with the adults. Most people had to leave but some were able to stay and play. It was a great time. It was so nice to talk to other adults and just relax. I feel like getting ready for Nathan's surgery later this summer is very stressful and just having a few hours to play games with my friends was great.

Here is a picture of the aftermath of birthday cake

Home... Finally

On the 8th I had to work and got back to the hospital a little after midnight. I talked to Nathan's nurse about leaving early in the morning. She told me that she needed to talk to the doctor to make sure all his discharge papers were ready to go - she came back in and told me they weren't. The night doctor also wasn't told he was being discharged and nothing was ready. I was exhausted and tired and let it go for the night.

At 6am I woke up to Nathan clapping, it's how he gets our attention instead of whining. I looked at him and he told me his eyes were open and he was awake. So that meant I was awake also. I figured since we were both awake we may as well pack up and leave. In came his nurse and I told her we were ready to leave. Then she tells me the night doctor said we needed to wait for rounds, at noon! There was no way I was waiting for rounds just to be discharged with no answers. So I told his nurse we were just going to leave and started packing. Then I noticed the doctor was sitting right in front of us so I went to talk to her. I said, I know you're not going to discharge us so we're just going to leave but can you at least write us prescriptions so we can still have his meds filled. The doctor told me that she had called the attending at home and was waiting on a call back. Apparently residents are so useless they can't even decide to discharge someone on their own, even when the attending had told us the day before we could leave.

So a little while later Nathan's nurse came in prescriptions and discharge papers in hand. We were home by a little after 7am. It was great to be home, finally. That morning while Trevor was still with Grandma and Grandpa I cleaned the house for Trevor's birthday party. Nathan had a great time playing with all his toys. Then Trevor came home and Nathan was so excited to see him, that faded once Trevor started touching his toys though.

Yesterday was Trevor's first birthday; I can't believe he's one already. In the morning I took Nathan to preschool to visit so he isn't so overwhelmed when he goes back on Monday. Then in the afternoon all 4 of us went to play mini-golf. Nathan loved it, it was so cute to see him having so much fun. The first few holes he would his his ball first and then he'd hit whichever ball he stumbled across first on his way to the hole. Then towards the end of the course he'd put his ball down right next to the hole and start from there. He had a great time, it was a lot of fun to watch.

Then we went to Grame and Geege's house to drop the boys off for their sleepover. Trevor got to eat a cupcake after dinner and he was thrilled. He made a mess of himself and loved every second of it. Nathan got a new ride-on tractor at Grame and Geege's house and drove it around helping to clean up all the little branches that are down from the recent storms.

Today is a lovely day for a picnic, it's cold and rainy outside. We have to move Trevor's party inside but that's no big deal. Hopefully everyone still has a great time and I know there will be tons of great food. I will post pictures in a few days of Trevor's party.

Going Home

Well, things are status quo around here. Nathan still has diarrhea and the doctors still have no idea why. They took a stool sample the other day to test it, and it came back positive for C. Diff - just a yucky bacteria that makes the hospital put him on contact precautions so he can't even leave his room so he doesn't give it to other people. Needless to say that when I got here today I was upset. He's been here for 3 weeks, the last thing they need to do is restrict him to his room.

So when the doctors all came in I told them time was up. They aren't making him better they are only making him worse. He is no better now than he was when we were first admitted. The diarrhea is the same, everything is the same. They've done 3 weeks worth of tests and got no answers. It's time to stop and admit defeat. The doctor agreed. We are going home tomorrow.

We have an appointment with our GI doctor in Boston for August, we have an appointment with our pediatrician on Tuesday - both boys have appointments that day. Nathan for a weight check and Trevor for his 1 year well baby visit.

So tomorrow morning we get to leave. Then we can start getting excited and ready for Trevor's party. I am so glad he's coming home. I am so sick of the hospital. Today I left for work from the hospital and then came back here once I was done. I want to go home, sleep in my own bed, take a shower without shoes on. I just want to be home. Nathan likes the attention he gets in the hospital. He likes that most people come to see him every day. Today he was thrilled to pieces to see Rob, who is a friend of my mom's friend Vicki. Rob just stood in the window and waved and Nathan was thrilled to see him - he waved back. Nathan has been in the hospital so much he's starting to like it. And I don't like that. We need to be back home. Tomorrow night, for the first time in a VERY VERY long time, we will be. All 4 of us will be under one roof - except when Matt is working of course.

Telethon Day

Today was the Children's Hospital telethon, it was on for 11 hours on Fox. It was where Nathan became famous - in his eyes at least. Geege (my Dad) was interviewed and did great! Nathan was quietly sitting there reading his books while Geege talked about how important it is to keep him busy and how hard it's been on our family to see him so sick. He also talked about how all the grandparents and my sister pitch in and take care of Trevor and sit with Nathan when one of us isn't able to. It was great. The little girl next to us has the telethon on her TV and the nurses can see it from the desk where they were sitting. So I was sitting in Nathan's room with him, Grandma and Grandpa when all of the sudden all the nurses and pca's started looking at us; then they told us Nathan was on TV. So we turned it on just in time to see most of the interview. The telethon raised over $2 million dollars, woo hoo!!

Nathan still has his catheter in, he will have that in until tomorrow after his tests are over. He will have an ultrasound and VCUG, we won't know results until sometime on Tuesday. For now Nathan is sick of the catheter - it feels weird and he doesn't like it, he's ready for it to come out.

Today he started pancreatic enzymes. The GI doctor said that it's clear the antibiotic isn't working so we may as well try something else. We will know quickly if they are going to work or not. I really hope they do work, I'm not ready to go back to no ideas on how to fix this. I am hoping to be home by Trevor's birthday at the latest but there are never any guarantees. We just have to wait and see.

Nope

We got the results, there is no fistula. I have never been so upset at good news. I'm glad he doesn't have the fistula and need a big surgery, I'm upset because that means we still don't know what is causing his diarrhea.

We had a consult with albany peds GI, he had a few suggestions to offer. He suggested the diarrhea might be caused by a severe bacterial overgrowth - I disagree but am willing to give that theory a go. Nathan is now on antibiotics, they don't seem to be helping. We're going to give them through the end of the weekend to work then on Monday we'll try out a new theory. Monday we will add in pancreatic enzymes and see how that goes. At this point I think anything is worth a try. He's been so sick for so long we'll do anything to make him better.

In kidney news the urologist is a little concerned with how his kidney looked in the last ultrasound. I guess it looked like there was "tissue" in his kidney, it could be the beginning of a stone or it could be a severe fungal or yeast infection. They placed a catheter today and are going to leave it in for 48 hours. After that they are going to do an ultrasound to look at his kidney to see how it looks. Then the urologist is going to do a VCUG, for that they put dye into his kidney through the catheter and see what happens. We are hoping all goes well. The urologist is always very careful with Nathan and takes all changes seriously because he only has one kidney and we need to do everything we can to protect it. His kidney function blood tests have been fine so he isn't all that worried.

I've made sure all the doctors know that we need to be home by Friday. We have to be home because Trevor has a big birthay coming up - he will be 1 on Friday. I can't believe a year ago I was still pregnant. Still getting used to thinking about the way things would be with two kids, little did I know it would be NOTHING like I had imagined.

I would like to thank my Mommy who took me out for a nice day today. We went shopping for Mickey Mouse stuff for Trevor's party and then went to get ice cream and pedicures. It was a wonderful break from the hospital for me. She is also staying at the hospital for me tonight so that I can get up early tomorrow to go to work. After I get out of work it will be back to the hospital for me.

Make sure you all watch the Children's Hospital telethon tomorrow, Nathan will be on it. They will be filming from the hospital and they already taped Nathan once - he was reading a book with Grandpa. Tune in and you just might see him, and see how cute he really is.

No News

This morning at 8:30 Nathan went to rediology for an 'Upper GI with Small Bowel Follow-Through' basically they were injecting contrast dye into his belly to see where it goes. After the dye was injected they did periodic x-rays all day long to follow the dye through his gut. For a while they were making us sit in the waiting room between x-rays but after a while Nathan was done, I was bored so we went back to his room. Then they started coming to us for x-rays, it was better that way.

We have no news from that study today. The last x-ray wasn't done until almost 9pm so the radiologist is going to review all the films tomorrow. The study he had yesterday was normal.

I talked to our surgeon in Boston today, Dr. B - we love her. She said that the cyst doesn't need to be removed right now, it can wait a while. Before she does remove it she wants an MRI done to look at the cyst and see which type of cyst it is. The radiologists in Boston said that what Albany Med is seeing as a cyst could just be a big gallbladder, so she wants the MRI before she does anything. Since he isn't having symptoms that are adversely affecting him she is going to wait on the surgery for a while. If the fistula is there then that changes things. The fistula would need to be repaired sooner rather than later and that would be an abdominal surgery. Since she would be in there anyway she would operate no the cyst at the same time. So then he would need an MRI before he has the fistual repaired. If he doesn't have a fistula we're back at square one with the diarrhea but he won't need surgery right away.

Dr. B also said that because he's having surgery in August to remove his trach she wants to wait a few months after that to do anything with the cyst, unless it starts causing problems. The cyst surgery is a big one that requires a lot of reconstruction, and so is the surgery he's having in August so she doens't want him to have two big surgery's so close together. She wants him to recover completley from the surgery in August for a few months before she does anything else. She, and we agree, feels that the August surgery is the more important surgery - decanulation!

So we won't know what's going on until we get results from the Upper GI test today. Once we know what that study showed we will know, surgically, what needs to be done. For now we wait, again.