Yeah for Hallie!

It is offical! Hallie is potty trained! What a huge accomplishment this is for her and I am so proud of her! For a child whose bowels work randomly and when they are working right, she has very loose bowel movements, this has been a challenge we have been working on for over a year. She decided one day a few weeks ago that she wanted to wear underwear-- made me VERY nervous. She had a few wet accidents, but did pretty good otherwise. Then she went in for surgery and I was afraid we would have major setbacks-- story of her life. She was in a diaper in the hospital because it hurt her too much to be moved. A volunteer asked her what the worst part about being in the hospital was and she told them that she had to go potty in a diaper. As soon as her pain was well controlled by pain meds, we made the switch back to underwear and other than a few random accidents, she has done fabulously! She still has to wear diapers at night because she pees non-stop when hooked up to her feeding tube, but this is such a huge step for her and we couldn't be happier!

Yesterday we helped some friends move and they gave us a twin size bed for Hallie. Derrick sanded it down last night and we need to get a mattress for it after it is painted. She is so excited for a big girl bed. She's been in a toddler bed for about 2 years and can't wait to move into her big girl bed!

All in all, my baby girl is growing up. These are milestones that I wondered at times if we would ever reach. We are going to start the process to get her declared disabled. She has a life full of medical problems ahead of her and especially, where her overall condition is not a common one, she seems to slide through the cracks of what help is available for her. I need to meet with the principal at the school and see how they want to deal with her when she is kindergarten age in 2 years. We need to decide whether to attach her to the special ed department but keep her mainstreamed in order to make sure that she has access to the medical care that she will need while in school. There is a possibility that she could qualify for the preschool there, which would be great because I don't feel comfortable sending her to preschool anywhere else. This way, she would have nurses in the classroom with her. Although, she would be exposed to a lot of germs she wouldn't otherwise be exposed to. It's a hard decision.

We have a lot of big decisions to make for her in the next little while that are pretty overwhelming. It is so nice to be able to celebrate this milestones in the process and enjoy each small little step forward that she is able to take.

I think he should be in the circus....

So Tucker is learning a lot of new tricks, ones that I am not necessarily happy about. He LOVES to climb. I have found him recently on our couches, our end tables, shimmying up the end of his crib (his arms were hanging over the end and his little feet were wrapped around one of the bars,climbing up-- how much longer am I going to be able to keep him in a crib?). He learned to climb the stairs months ago. He uses anything he can find to stand on and give him a boost up.

The last week or so, I noticed that when he was on furniture, he would turn around and start to get down safely-- yeah! Yesterday I found him climbing down the stairs on our front porch-- he would go down one, then back up, but didn't dare go down both steps. I had him in the playroom while I was doing some deep cleaning when Carson came in to tell me that Derrick wanted me in the garage. Tucker was completely occupied, so I left him and walked out to the garage. At that moment, the ice cream guy drove by and thanks to Aunt Sis, my kids have money for ice cream. So, I walked across the street to help them get some. As I was heading back across, I saw Tucker figuring out how to get down the second stair in the garage. I guess the door must not have shut all of the way when I came out. Anyways, he made his way into the garage, found a water bottle, opened it and started drinking from it. The kid is only 10 months old! I shouldn't have to be worrying about him escaping from the house yet!

Later last night, Derrick called me upstairs to show me Tucker's newest trick. He can get off of beds now. He throws his little leg over the edge, scoots off, holds on until he can't go down any further and then drops the rest of the way. Great. I am a nervous wreck with him anymore. He has NO fear! I don't leave him on beds normally for him to discover how to do this, but Derrick thinks it is great and will throw the remote off of the edge and watch him go and get it. Grrrrr!

And for his latest trick, he has learned how to go down our entire staircase. This morning he was climbing down 2-3 stairs and then crawling back up to the top. He did this about 5 times then I went to go get Carson some toast. I found Tucker just getting off of the bottom step. He is so proud of himself! At least with this one, I don't have to worry so much about him falling!

What a child! He is so close to walking, but has more interest in climbing and other things. I guess I should be grateful that he isn't walking yet, but how I wish he wasn't learning some of these other fun tricks!

Lucky number 10?

Hallie went in last week to have a gastrostomy tube put in. In essence, they made a hole in her stomach, one in her abdomen wall and attached them together to put a "button" through to create a permanent feeding tube. This was surgery #10, but who knows if it will be her last.

I was a little nervous (all right, more than a little) because we chose to have it done here in Reno, with a surgeon that we had just met. He was recommended by our Salt Lake surgeon, who has worked with him at the University of Utah hospital. They keep in touch and they even set up a conference call one morning, where they spent an hour going over Hallie's history with a fine tooth comb and what Dr. Scaife (SL surgeon) would do if Hallie presented with different symptoms. It is really important to me to have a surgeon here, who can at least do the diagnostic tests Hallie might need, so that she isn't shipped off to Salt Lake to just be taken off of food and then be sent back. And it is important to have a surgeon who is willing to hand Hallie off when she gets to a certain point-- making the best decisions for Hallie's health and not for his ego. I met with the pediatric surgeon during one of Hallie's hospital visits here, and I felt like I was totally blowing her ego by suggesting that she wouldn't be performing any big surgeries on Hallie, that we would be sending her to Salt Lake for those. So, I am comfortable with Dr. Devia (Reno surgeon), but regardless, he had never operated on Hallie and she is so complicated that it made me nervous. On top of that, she was having surgeon at a hospital where there pediatric unit consists of maybe 10 beds if they are lucky. They aren't very good at catering to the little ones and when we are used to a children's hospital, that is a big change. Hallie has stayed at this hospital numerous times, but having surgery there is another story.

Hallie's surgery was scheduled for Tuesday June 16. Originally we were told to be there at 5:30 am, but they bumped her back until 9:30, surgery at 11:30. She was not a happy camper not being able to eat for that long. The funny thing is that Hallie was so excited for this surgery. You would think that after her last surgery, she would have been apprehensive, but she wasn't really. She knew she was going to have to get an iv and she was even pretty good when I took her for her blood work the day before. She kept telling me she wanted to go to the hospital, days ahead of time. She was so thrilled to be getting a tube in her belly, where nobody can see it, although she now shows it off to everyone! Getting to the hospital, I went to sign her in and she started digging in her back pack to find something to play with. Unknown to me, Carson had helped her add a few things that morning, mostly food. So when we had to take it away from her, she started sobbing. It was a long wait. And when they tried to get her to do stuff, she was pretty resistant. They asked her to put on pj's. She sobbed. I finally convinced her, but it took some doing. They asked her to take her earrings out. She refused. They wanted her to put the little cap on. You would have thought we were asking her to end the world. It was pretty challenging. Especially since we are used to the children's hospital, where they tell you to not worry about it, that they will just take care of it after they get her to sleep. Her last surgery, she went back in her own clothes, earrings in, and no cap. Here, they just don't realize how traumatizing this is for a child who has spent her life in a hospital and knows exactly what to expect.

Luckily, they had requested a pediatric anesthesiologist and he was pretty cute with her. They had told us the anesthesiologist would be in soon and Hallie looked at us and asked if Anastasia was mean. We tried to convince her that anesthesia is a medicine to help her sleep and not feel anything and the doctor giving it was very nice. We asked why she would think that he was mean and she said, "Because in Cinderella, she was very mean and tore her pretty pink dress." What a crack up!

I requested they give her some medicine to help her relax before taking her back. It also has an amnesiac effect, so she won't remember anything leading up to surgery. It makes her pretty goofy. She had already had it in the picture above. It makes it so much easier for them to take her back and for me to let her leave.

Surgery ended up taking longer than expected because the surgeon wanted to take it very slow because of all of her scar tissue and the fact that her pancreas wraps around the bottom of her stomach. He had hoped to do it laproscopically, but she ended up with about a 3" vertical incision above her belly button. They gave her demerol for pain, which she had never had before and of course she had an allergic reaction to it. By the time I got back to recovery, her face, chest and neck were turning this splotcy red and it kept going until it was almost purple. It is a good thing I had insisted they give her benadryl before giving her the demerol. I would hate to have seen how bad it would have been without it!

Hallie did really well after surgery. She and I had a slumber party at the hospital, but she was ready to head out the next morning. We used the time in the hospital to try and pump some iv fluids into her and help her hydration level. She has a hard time staying hydrated because of how much of her large intestine she is missing. We ended up with several nurses that we had had before, which was great.

She is doing really well. She is mostly off of pain meds, except for if I know she is going to be more active, then I give her a small dose to help her out. She is VERY emotional since surgery. I had hoped it was just the anesthesia or pain meds, but those should all be out of her system by now. I am not loving this little phase. She melts into a puddle over anything. And I do mean anything. It is so frustrating because there is just no reasoning with her. I don't want to spoil her and just give in to everything, but it is so hard when she has gone through so much. We are hopefully finding a happy medium.

Hallie is really proud of her new "button". She loves that nobody knows she has one, but she also loves to show it off. Some of my friends have started calling her Button. It has been a lot easier to take care of then I had expected, although it is now starting to leak a little bit that I get to clean off every day. But all in all, I think it was a very good move on our part. I will post a picture of it when I find my camera!

Tucker's 9 mo pics

So I know that Tucker just turned 10 months yesterday, but I just got his 9 mo pictures scanned in, so I wanted to post them.....

It is incredible to me how different Tucker is from my other 2 kids. He is so easy going and happy. So many people have told me that they can't believe how much he smiles. But it is more than that. Carson and Hallie HATE loud noises. They climb on the couch or beds whenever I vacuum. Tucker, on the other hand follows me around when I vacuum, trying to touch the light on the vacuum cleaner. Carson liked baths, but Hallie hated them. They both hate water in their eyes or face. Tucker LOVES the water. He showers with me all of the time and sticks his face right in the water. You could put him on the floor of the shower and just let him sit in the water and he loves it. Carson always wanted to be entertained. If I left him to play by himself and it was quiet for more than a few minutes, I knew he was getting into trouble. Hallie never really learned to play by herself because of being in and out of the hospital. Tucker crawls into the playroom or one of the kids' rooms and he will play all by himself for the longest time.
Tucker is crawling everywhere and learned how to crawl up the stairs about a month ago. He is very proud of his accomplishment. He crawls up there and sits at the top of the stairs, like look at me. He loves that he can now get into the kids' rooms up there without me taking him upstairs. He is starting to climb on everything. He climbed on Hallie's little pink chair the other day like it was no big deal. I was putting dishes away and turned around to find Tucker on top of the dishwasher door.
Derrick calls T Emeril because he LOVES anything to do with cooking. He will stand in front of Hallie's play kitchen and just play and play. The other day he played with a ladle for half an hour, totally happy. I pull down the container of fake food and he is in heaven.
Tucker LOVES dirt. I can't keep him out of my plant. Derrick says it's like his oreos. He gets it all over his face and when you tell him no, he giggles. And his laugh is hysterical these days. Half the time it is this evil, villainous laugh and the other half it is this high pitch giggle. You can't help but laugh when he does. And he laughs at everything.

And as for food, well that is T's favorite thing. I have yet to find anything that he does not like. He has just gotten his 3rd tooth (he is working on cutting 3 others), but that does not slow him down in the least bit. If his brother and sister eat it, he is sure he must have it. It is so nice to have a child that eats whatever you put in front of him.
We have had to stop sitting towards the front in church because while Tucker is very entertaining to the people behind us, he is also very distracting. He makes friends very easily. Some people call him the ward baby because of the time that he has spent with people in the ward while Hallie has been sick.

As for his looks, it is liking having twins 6 years apart. It is very eery how much alike Carson and Tucker look. I showed a friend a picture of Carson when he was a baby and she said she liked the picture of Tucker. Take a look for yourself how much the look alike....

I knew from Tucker's 3D ultrasounds, that they had very similar characteristics, but it seems the older T gets, the more he looks like Carson. It's a good thing they are cute!

What a joy Tucker is in our lives. We are so grateful to have him in our family and for the joy that he brings to us!

Surprise Visit

The Wednesday before Memorial, I got a phone call about 5:00 from my brother Cody. I told him I needed pictures of his baby Tatum and Cody asked what we were doing for the weekend and if they could come out. We didn't have any big plans, so we were thrilled to have them come. I asked him when they were coming and he said they were going to pack their bags and hit the road. They got here about 2:30 Thursday morning. Here are a few pictures of their trip....

Virginia City

Scheel's Sporting Good Store

Hallie wanted to "ride" in the stroller-- this is one of those that the baby carrier snaps into, so she crawled into the basket instead!

Tucker & Tatum-- they are only 4 months apart and destined to be good friends!

Thanks for the visit Cody and Heather! We had a great time- See ya soon in your neck of the woods!

Funny Faces

One of Tucker's many funny faces. He makes quite a few of them! Yesterday he started laughing this villianous laugh. He is constantly making us laugh!

Mowing the Lawn