The Big Surgery

We checked in to Primary Children's on Tuesday morning in preparation for Andrew's surgery. Ryan was able to have this week off work, so we all spent the day together. Andrew had an IV placed and had a chest x-ray and an esophagram done. He had a bit of a cough the few days before, so the x-ray was to make sure his lungs were healthy enough for anesthesia. The esophagram was so the surgeon could get a better idea of what the esophagus was shaped like.

A generous donor gave this awesome toy tractor to the surgical dept for Christmas, and the boys LOVED it. They had a great time putting blocks in the bucket then dumping them out and scooping things up.

Andrew had to have his colon cleaned out in case it would be needed to replace part of the esophagus. It is basically the same procedure as preparing for a colonoscopy. They were able to just pump the fluid through his G-Tube, which is nice because most kids have to have a tube put in their nose to get it all in. He was on a continuous flow of "Go-lytley" (it's has electrolytes, but someone must have thought it was funny to put anything about going lightly, because lightly is on the opposite end of the spectrum from how you go after that) at a rate of 200 cc's an hour for 6 hours. That's almost 7 ounces an hour. Then a couple enemas. He was only allowed to have clear fluids all day Tues and then nothing after midnight. It was a long night.

The day of surgery Tyler stayed at Grandma Nina's and had a great time with his grandparents and Aunt Nikki. Andrew was surprising chipper, in spite of not eating for so long, and played and was happy all morning. We went downstairs and handed him off for surgery about 10 am.

Surgery took about 4 hours, which was the minimum estimate. Things went very well.

The surgeon decided to do a different procedure once he was inside, but we are confident in his decisions. Instead of removing the scar tissue, he made a vertical incision in the esophagus across the scar tissue. Then imagine if you take that slit and spread it to a diamond shape, and put the top and bottom together to make a horizontal slit instead. He stitched the esophagus across the horizontal line. This adds diameter, without removing esophagus and without disturbing the blood flow to the esophagus (which can cause strictures).

Andrew was nicely sedated yesterday and his pain control has been good. He mostly sleeps, but wakes up to check if Ryan or I are still with him. This morning he seemed very sad about the situation he was in and just cried gently. It is difficult to see him in a state like that, when I know how happy and fun he usually is.

Andrew moved from PICU to the surgical floor tonight. He also got a GJ put in today, so he is able to have feedings into his intestine now while he heals and is not allowed to eat. He had an arterial line to continuously monitor his blood pressure, but had that removed today along with his catheter.

He has still needed some oxygen, but will probably not need it once his pain improves. He now has a tube in his nose to remove the bile from his stomach while he's not eating, an IV in his neck and one in his wrist, a chest tube to drain the fluid from his chest cavity, and "no-no's" which are the restraints on his arms to keep him from pulling out any lines or tubes.

Monday he will have another esophagram to see if the esophagus is healed enough to hold liquids. If it is then the chest tube will be removed and he will be allowed to start eating. His pain should also be much better by then.

Thank you so much for the love, prayers, and support from so many people. We feel very blessed to have such wonderful friends and family.

Happy Holidays!

Dr. Tyler
Dr. Andrew

Merry Christmas!

Sweet Little Boy

Ty doesn't nap much anymore, but today he just couldn't fight it anymore.

Things are going smoothly down here in Emery County. The Christmas tree and lights are up, and the shopping is nearly done. I have a quirky biased against the whole Santa Clause thing, so we haven't talked about him with the boys. We've been just saying that Christmas is Jesus' birthday. And he knows that he's getting presents from Mom and Dad. Ty kind of gets the birthday idea, but how we would have Jesus' birthday is a stretch for him. I'm actually really pleased that they don't have this idea of some secret man bringing presents. Hopefully we'll be able to keep that out of our traditions without ruining it for the other families in the years to come though.

The boys are really missing their outdoor time. Even though the weather has been pretty warm for December, I haven't been making the effort to get them out everyday. Today Ty finally begged to go out, so we went out for 40 minutes. I was very ready to come in, but the boys were loving playing in the sand, and with their bikes, and sports toys. Daddy's return from work finally enticed them in.

Andrew's surgery is scheduled for Dec 29. (The surgeon recommended that we wait until after Christmas, just to make sure we could have Christmas at home.) We'll actually check in the day before and start bowel prep. They will run clear fluids through his g-tube all day to clean his colon, just in-case they need to use it if there is not enough esophagus. He will only be allowed to drink clear fluids for 24 hours before surgery.

The surgery is a minimum of 6 hours. I think when we did surgery last year they said it could be 10 if they have to use the colon. Last time it took 6 hours. Then he'll be on lots of pain meds, so he'll be on a ventilator for a few days. 7 days after surgery, Andrew will have an esophagram to see if the esophagus is healed enough to hold fluids in. If it is healed he will be allowed to start eating. If the fluid leaks then we will wait in the hospital until it is healed better. Sometime after he's allowed to start eating we will be allowed to go home.

I am so glad that our surgeon is thinking of what's best for Andrew and has decided to put a GJ tube back in. So the week that he's not allowed to eat, he'll be tube fed into his intestine. That way his esophagus is protected from any reflux, but Andrew won't feel hungry, and it's much healthier than IV nutrition.

I'll try to keep the blog, or at least Facebook, updated as we go through this. Tyler will be my mom the day of surgery, then with Ryan or I as we take turns staying at the hospital until the New Year. Then Grandma Shell and Grandpa Steve will be watching him while Ryan works. I'm sure it will be wearing on all of us, but we hoping that this will be the thing to ultimately allow Andrew to have a healthy esophagus and not need anymore hospital procedures.

Please keep him in your prayers.

Have a very Merry Christmas!

Halloween and More

Ty ready to trick-or-treat at Grandma Shell'sAndrew thought it was fun, mostly because that's what the big kids were doing I think.We went to Millsite and had a campfire on Halloween. Tyler discovered this 4-wheeler at DI and stayed on it the entire time we were in the store. He even pushed it with his feet all the way from the back of the store to the check stand. He even asked if I would put it on his lap in the car! He rides it every time we go outside now. It was only $3, so it was worth it to me.

Safety first!

Things have been going about the same around here. It's cold most days now, so I don't like going out to play. The boys still want to everyday though.

I've been working with Tyler on learning colors the last few weeks, and he's catching on well. He was saying colors before, but usually the wrong color for the item. I started labeling colors of things more, and we got a book at the library last week that was about colors. Now he's getting most of the basic ones right, most of the time. He still sings songs all day. He's so good at memorizing! He even started quoting parts of the sacrament prayers. Sometimes he quoting things that I have no idea where he ever heard some of the phrases. I'm sure getting more aware of what is on TV now, because I want to make sure I'm OK with him remembering and repeating what he hears and sees.

We have started making a weekly library trip. The boys really enjoy the outting and having some new books to read. The biggest hits so far have been dinosaur books, Bob the Builder, Dora the explorer, and the Butterfly book (with colors). It's been good for me to start reading again too. I pick up a new novel each week and get through it before the next time we go back.
Andrew is still doing well, and about the same. He's had a little cold this week. He lost another .1kg in the last few weeks. The doctor had been happy that he was nearly maintaining with all the sicknesses he's had, but I think I may be getting time to start tubing some extra calories again. He is starting to eat more the last week, so I'm giving him until next dilation to prove himself. If he loses again, then I'll have to set up a new plan with his doctor.

Andrew had his first BodyTalk session last week. It went really well. The therapist worked on the lymph in his neck and on separation anxiety issues (not surprising that he has that). She also recommended that he see a chiropractor. I checked and our insurance covers it fully for him (because he's already met his max out of pocket), so I took him in. The chiro Dr said Drew had several problems in his neck (which is related to his esophagus stuff), his T6 was out, and his hips were tilted. Andrew was definitely nervous and not a fan of the adjusting process. He cried so hard, and kept pointing to the door. I felt so bad for him, but do want for him to be able to heal and be healthy. We are going for both chiro work and then BodyTalk again Monday. (Thank goodness BodyTalk is very calming.) I'm not sure how long I will be able to stand taking him to the chiro if it's always as hard on Drew as last time, but I'll give it a chance. I'm hoping that with the new therapies we'll be able to go longer in between dilation's as a sign that it's working. For the most part he is happy and doing well. His vocabulary is really growing. I love that he can communicate what he wants. I'm starting to say no more to him, which no kid likes, but I know it's good for him. And it's good for us as parents, cuz I don't really like dealing with bratty kids. He's really a sweet kid most of the time though.

Ryan has been bird hunting a bit. He's been working with a different crew for a while, testing the gas pumps for Conoco. He's liking the work and likes the guy he is working with. He got a new work coat to keep him warm, since he spends most of his days outside. I'm am so grateful for his hard work to support our family.

Life as the mom is about the same. Dishes, laundry, storytime, playtime, clean the bathroom, run the errands, etc. I wouldn't mind having a maid, but I love my little family so much. It's all worth it.

Fall Fun

We've been enjoying the last few warm days of the year by playing outside. When they put in curb, gutter, and sidewalks this year they had to redo our driveway, so it slopes toward the house now. Andrew pushes himself up the driveway with his feet and then lets himself roll down. He gets a thrill of it every time.
Tyler got a bike for Christmas last year, but hasn't really been interested in riding it. And he really didn't care to learn how to use the pedals. But one day, a few weeks ago, he got on the bike and started pushing the pedals! I think next summer will be full of bike rides. Neither Ryan or I own a bike at this point, but I'm sure we'll be investing in a set soon.

Isn't Drew cute in his undies! (This will go on file for all future girlfriends and high school events). We did the potty training bit for a few days, but I am inpatient in general and even more so with potty training, because I just finished with Tyler. So I thought I'd give in and wait. But this week I've seen Andrew grabbing himself when he wets his diaper. So I guess I'll start up again. We'll be on the go for about a week, but after that I've determined to give it a solid effort.

For some reason Andrew pulls this face all the time. It's just to be silly, I think.

As far as the medical aspect goes- Andrew is doing well with his eating. He eats and eats and eats. Seriously, we have breakfast, snack, bottle, lunch, snack or two, dinner, maybe another snack, and another bottle at bedtime. We eat ALL day. We have been about 6 weeks without any tube feeds! He hasn't gained any weight overall. He got sick and lost .4 kg, then gained it back, and has lost another .2 kg in the last 3 weeks. His pediatrician was mediocre on it until I told her that Drew was really sick 5 days, had a green runny nose after that, and has had ear infections (probably from the yucky mucous of the green nose) and has been cutting 4 teeth. Then she was excited, and said he's doing great to have all that going on, and not loose weight. So we're giving the tube-free trial another couple months! Tube feeding doesn't take a ton of time in reality, but it's sooooo nice to not have to hook him to a pump at night, or make up 16 oz of formula every night. And it's so nice to not need to be as careful about making sure I have tube supplies with me every time I walk out the door. It's been a huge relief. I keep a spare tube, extension, and little syringe in my purse now, and don't think about it beyond that.

As far as dilation's, we're back on the same track as before and he needs dilated every 2 weeks. The surgeon said it's probably time to give up and do surgery. They would go in through the same incision, under his shoulder blade, as the first 2 surgeries. Cut out the scar tissue, put the esophagus back together, and hope that it doesn't stricture this time. Ryan and I are REALLY not wanting to put Andrew and our family through that. It would be at least a week in the hospital, and it's awful to leave Tyler and know that Andrew has to go through the trauma and pain of another surgery.

It just so happens that I went to a class last week that I learned about another type of energy healing therapy. It's called BodyTalk. It may sound 'out there' to many of you, but I am so excited about it. I had learned some of the techniques before from my awesome friend Lisa, and have seen them help me and my boys. The instructor did a free session at the end of our class, and I was the lucky name drawn from the bowl. It was amazing, and I feel so much better this week than I have in a long time. So, we are going to try this therapy for Andrew. It's at least worth a shot, and I really believe it will help him in so many ways. His first session will be next Thurs.

Potty Training Again??

A few weeks ago Ryan and I built some shelves for our storage shed under the car port. The shed is good sized, but has previously just been stacks of things. Now we'll at least be able to keep the tools, car fluids, paint, etc on the shelves. I love a good little project!

Tyler loves wearing his costume still. Today he tried to put it on without any other clothes under it. He's not much of a poser, but I did get him to show me his wings.

Andrew has been saying "Pee pee", and "potty" and now comes and tells me when he goes, "poo poo". And he likes to sit on the froggy potty. So, I've toyed with the idea of trying to potty train him now. The first day I tried he wet himself and ran to me saying, "ahh, pee pee". Today he wet and brought me a pair of clean underwear to put on him. I'll give it some solid effort for a few days. It he gets it that would be sooo cool. I would love to not buy diapers for a while! If not, I'll wait until he's 3 to try again.

He's so short that even the little potty is tall for him.

One of Tyler's new hobbies is playdough. He asks to get it out at least twice a day lately. He really enjoys when Ryan or I will sit and create with him. We make faces, ice cream cones, houses, snow men, and lots of other things. He likes to use the rolling pin and the sporks.

He is also really into playing in the toy bucket. If you stop by my house at any given time, the toys are likely to be in a heap in the corner because Tyler dumps the bucket almost as soon as we 'clean-up'. The bucket, and my laundry bag. The other night he climbed into the laundry bag, and put the bucket over-top himself. This picture he said to me, "Look mom, I upside-down!" Funny kid.

Found the camera!

The Boys and their love of music!
Andrew sick and sleeping!
Tyler dressing up to be Andrew's Dr.

Tube Free! -for a few days

Well, we made it through the weekly dilations! We did skip one week, but made up for it with an extra one yesterday. The surgeon says that his stricture is looking great. He's been able to get it bigger than ever before. The positive side for Andrew is that he hasn't been getting food stuck in his throat. He eats, and eats, and eats. He's been doing so well that we have not had to do tube feeds! He got a cold a few weeks ago, and didn't eat or drink for 4 days. We did use the tube to keep him hydrated during those days. He lost .4 kg during that week, but gained it all back this last week. The next step is to now do dilations every other week.
Andrew took it on himself to be tube-free, literally, this weekend. Friday we traveled up to stay with my family for the weekend. When I took Andrew's shirt off that night, his tube was gone! The hole had closed and scabbed over! I had heard of kids pulling their tubes out, but I really couldn't comprehend how they would pull the balloon through the stoma (hole in the skin for the tube) without some severe pain.
I called the surgeon, and he said that there is always still a very small hole open and that he could dilate the stoma when Andrw was in for his esophageal dilation Mon. So today the tube is back in place, and has plenty of water in the balloon. It would have been nice to just leave it out, but since we do still need it when he's sick we'll keep it around for a while. Ryan found the tube tonight and there was not as much water as there should have been, there was still water in it.
With Halloween coming fast, I was starting to think of costume ideas for the boys. Grandma Shell took care of it for me though! She had picked up some costumes on clearance last year that fit the boys. Andrew's is a horse. It looks more like a cow, but it's cute either way. Tyler's is a green dragon. He cried the first time we put it on him. Once we pointed out the awesome tail and wings, he warmed up to it. Now he wears it everyday! As I type, he's wearing it while he watches "Wonder Pets". Hopefully he won't stain or rip it before trick-or-treating.
Ryan and I did get a date this month, and even hired a babysitter. We went to the ward adult cook-out. It was a nice little break. We're hoping to get a more regular date pattern worked out.

The Latest Plan

Well, I kept thinking that I was going to post as soon as I got some good pictures of the boys to post. But that hasn't happened yet, and my camera has been claimed for the purpose of taking pictures of the wildlife that Ryan is currently hunting. Ahh, yes. The deer archery hunt is in full swing. So far I have handled the hunt very well. No crying and no bitter feelings toward the deer. Just a few more weeks to go.
I am actually rooting for Ryan to get a deer this year, as opposed to the last few that I have sided with the deer. That way Ryan will be happy, and I have my husband back home again. We'll see.

The only real change in my life is that I was called to a new position in YW. I had been the Beehive Advisor, but am now the Secretary. I'm really looking forward to this calling. I love being in YW, but this way there is much less time and preparation required.
I will have 11 piano students this fall, and am ready to have mornings for my boys again.
Otherwise my days are about the same. Dishes, laundry, storytime, walking, etc.

The boys are doing great. Tyler has done awesome with his potty training. Since the 'pink potty' came along, he only has accidents when I forget to remind him and he's too busy playing to stop himself. More and more he's going without reminders. He still resists BM's, period. He started doing that a while ago, and hasn't moved past it. According to the nurse practitioner I take Andrew to, that is really normal with potty training.
Tyler has also become quite the singer, and frequently sings while he plays. He likes to sing songs from the movies he watches and the songs from nursery. Most of them are classic children's songs like 'Itsy Bitsy Spider', 'Hey Diddle Diddle', and the finger song. He knows the words to several now. I even heard an attempt at the alphabet the other day. It's really fun that we can sing together now.

Andrew's had a busy month. After last months dilation, he continued in the old pattern of needing dilations every 2 weeks. He had a dilation on the 13th. The procedure went fine, but after we got home Andrew started to get very uncomfortable and by the next night had stopped eating. He laid, moaned, whined, and slept for 5 days! I had to put him on a continuous feed to keep him hydrated. He would not eat and cried even harder when I tried bolus feeding. We could not figure out what was causing his pain. We tried pain meds, oils, the heating pad, but never found anything to soothe him. Finally, the doctor said we needed to take him in for an upper GI scan. We were scheduled for Thursday. Andrew somehow popped out of his discomfort and woke up at 4:30 am ready to eat and play. He was fine and happy until we went in for the next dilation on the 23rd.
Dr. Barnhart has recommended that our next plan be to dilate once a week for 6 weeks and apply mitomycin to the stricture during the procedure. The 23rd was the first of the 6. Things went great, but two days later Andrew fell into a strange funk again. This time it lasted 4 days and included 'the runs'. He didn't seem to be in as much pain as the first time, and he ate some, but it was still rough on all of us. We are so glad that he is back to himself this morning. I recruited the help of my friend yesterday. She is amazing with natural healing. She helped us to know that it was a stomach problem, and what oil to use. I put Physical Touch blend on him several times last night. He ate dinner, but still laid around all evening. He woke up 4 times for bottles last night and woke up back to his happy self this morning! I had given him whole milk last Wednesday, and I think that is what threw him off this time. He's been on soy formula for almost a year, so we were trying to transition back to a more 'normal diet'. I'll start looking for another option now.
Five more dilations to go. They will be the 1st, 7th, 13th, 20th, and 28th. We are really hoping that this will take care of that stubborn stricture and allow Andrew and I to be free Primary's Same Day Surgery for a long time. Please keep him in your prayers.

Fundoplication Diagram

This is a little hard to read, but it at least gives an idea of what the fundo is. The highest part of the stomach (or fundus) is wrapped around the esophagus and stitched back to itself. The last picture also has a G-tube coming out of the stomach.

Andrew is doing great. He is the same kid as before except for 2 things. 1) He's hungry more frequently. Which makes sense because his stomach is smaller now. 2) The lack of reflux symptoms. He had slept with his mattress flat now. Before I always kept it inclined to help decrease reflux while we ran his pump at night. He used to reflux and choke on it if he cried too hard, or laughed hard. One day he drank some water, and then was crying over something, and the water came right back up with such force that it came out his nose! I laughed, but it was a good demostrate of the ease of his reflux. He was really mad about it.

Since the fundo, I haven't seen any sign of reflux. He still sleeps with his back arched, but I think it's because he's used to sleeping that way now.

We did do dilation on the 29th. His striture had narrowed some, but not nearly as bad as before. The surgeon said that the incisions look good. We are scheduled for another dilation and to get the tube changed to a button (the smaller version of the tube) on Aug 26.

We spent a few days after that at my mom's. We visited with my aunts and cousins on my dad's side, and also went to my Grandpa Noyes 90th birthday party.

When we got home Sunday, I was nearly out of diapers for Ty. I mentioned it to Ryan who replied, "Don't buy anymore." I'm not sure how serious he was, but I thought it was a good idea. We've had several potty training attempts, but something always stops me after a couple days. This time we were out of diapers, so there was no way out unless I went to the store. The first day wasn't great. Tuesday I had to go to Price, so I decided to buy a potty chair while I was there. I had told myself I would let him choose whichever seat he wanted, no matter the cost. I figured if he was excited about it we had a better chance. So what did he choose?

The PINK 'froggy potty seat'. They had a green one, but Ty wanted pink. To my joy, it was only $13. We got home, and he used it right away. He's only had 1 accident since. He has bargained to wear any diaper (including Andrew's diapers, which are way too small) to bed. He's found diapers even I didn't know I had. That's good enough for now. He wears his underwear the rest of the time. In previous attempts I would have him wear a diaper when we went places. This time I've just left him in underwear and he's done great! Even our 3 hour trip to Price, and 3 hours up the mountain. He just held it until we got home. I am sooooo excited!

Happy Again

Ty and I got a chance to relax in Grandma Nina's pool while Andrew was recovering.
Ty doesn't care much for actually swimming. He really likes to stay on the stairs and throw the toy torpedoes for others to gather.

Andrew did spend a few days fairly miserable after surgery. He wasn't allowed to eat or be tube fed until 5 days after surgery. He wasn't even interested in eating for that amount of time because he was just trying to sleep off the discomfort. This picture is from Sat 7/17. He was starting to be awake and grumpy by then.

We started feeding him by tube Sunday. What a difference! We started at 10 cc/hr, which is 2 tsp/hr. He had to prove he could tolerate that for 24 hours. Then they increased the rate by another 10 cc's every 6 hours until he got to 40/hr. That was enough for him to come home on Tues. By then he was also starting to want to eat by mouth. Now that we're home he eats anything and everything. He has completely given up his bottle since not having it in the hospital. Nothing wrong with that, I guess. It was a good way to get in extra calories by mouth, so I'll just have to tube feed that much until he starts eating more calories.

His wounds are still draining some and are red. I plan on trying to use oils to help lessen the scarring. I'm not sure if he'll think they're cool, or just be embarrassed by them when he's older. I hadn't realized until I was taking off steri-strips that they went through his belly-button for one of the holes! There's one more to the right that isn't shown in this picture. His pain has been lessening, and very managable since being home.

I'm not sure if it's being sore from surgery or just a growing up thing, but Andrew has also started walking EVERWHERE. No more crawling. It's still new to me to have him walk into the room or to walk when he wants to play with a toy across the room. It's great for him though. His newest trick is carrying things and talking while walking. Last night he was so proud of himself he did laps around Grandma Shell's living room for a lot of the evening.
We have a follow-up appointment with Dr. Barnhart next Friday. The results from the nissen seems to be optimal. I haven't noticed reflux symptoms. Andrew did gag and heave the first few days in the hospital, but since getting food again hasn't had any episodes.

As for the stricture it's just a wait-and-see deal. He's been able to eat great since we got home. Today he gagged up twice, but it may just be that he was shoving too much in his mouth too fast.

It's great to be home, and great to see Andrew doing so well. It was so hard to watch him go through surgery and the first few days after. I would sit in the rocking chair and cry for him. We trusted our answer from the Lord that this is what he needed next. Now that I can see that Andrew's healing and so happy again, I'm so glad that we made this choice. Thank you so much for the support and help from all of you.

Fundoplication Surgery

Well, after a lot of thought, research, discussion, and prayer, Ryan and I felt like it was time to go ahead with fundoplication surgery for Andrew. It's a surgery to stop reflux, where they wrap the upper part of the stomach around the esophagus, and then sew it back to the stomach.
We had known for a long time that this was a possibility because Andrew has such severe reflux, but were trying to avoid it. Now that he's had such problems with his stricture and his reflux has not improved as much as we had hoped, the surgeon recommended that we do the surgery to stop reflux from irritating the stricture.
We went in for the surgery Tuesday. Start time was expected to be 12:30 and it was going to be about a 3 hour surgery. Well, he didn't end up going in until 2:15 or so. Then they had a much harder time than they anticipated. The plan was to do the surgery with laparoscopy (5 little holes instead of an incision). Just after 8 pm the surgeon finally came out of the OR. We'd had updates throughout surgery, so we knew that Andrew was ok, but that things were not going as smooth as they had hoped.
They ended up making an incision after several hours of trying to do the surgery with the laparoscopy. They also ended up moving Andrew's G-tube sight. Which overall means they closed the old one and made a new one. Most of Andrew's small stomach was used for the surgery, so we'll have to stretch his stomach again. Overall he's doing fine. He's has decent pain control, and has been stable and healing fine. He is not interested in doing anything beyond being held and has slept 98% of the last 2 days, so far. The pain should decrease from here though. He has avoided coughing or clearing his throat at all, and did run a high fever Tues night, but an x-ray cleared him of any infection worry.
He got a PICC line placed today. Which is like a long IV that goes from the inside of the elbow, through the vein and ends just before entering the heart. He'll get IV nutrition, and all his medication through that until Sunday. Then he'll finally be able to start having G-tube feeds. He'll be starting all over, like he did in the NICU last year. They will start at a very slow rate, and use drip feedings to avoid having pressure build-up in his stomach. Then slowly increase the rate. When he gets to the full volume of feedings and tolerates it, then he can come home. The magic number is 36 cc's/hr, I think. That's just over 7 tsp/hr on a continuous feeding. We'll work on the rest at home.It's hard to see with all the tape, but you can probably tell what's what. The top bandage is the old G-tube site. The line below the tube is the incision site. The rest are the little holes used for laparoscopy. And, of course, the new tube. He'll have to have the long tube until the new site heals. This tube doesn't have a balloon on the inside because his stomach is so small again, that a balloon would possibly block to exit from the stomach to the intestine. Instead there is a plastic disc on the inside. I'm not sure how they get it in, or how they'll get it out, but that's how it was described to me. Ryan and Ty have been staying at my parents at night and visiting the hospital in the day. I stayed with Andrew the last two nights. Tonight Ryan and I will switch, and I'll stay with Ty while Ryan is with Andrew at the hospital. Man how we love those hospital pull-out couch beds! At least we get to stay with him.

Summer Fun

Like father like son. Ryan and Ty waiting candy at the Parade.
The boys at the 4th of July family party.

Ty loves getting into the dirt!

Andrew is walking now! He's been really close for a while. He started just taking a step or so, then three, then eight, and now he's anywhere he wants to be. Already he's getting pretty fast too! He really likes the independence.

We got Ty this little loader last week just for fun, and he loves it so much he even sleeps with it! He scoops anything he can find all day long. Andrew is a little jealous, but steals a turn when Ty is distracted. Usually we give Drew a dump truck and they play together with them.

Andrew is getting so close to walking on his own. He really likes to use one of these push toys to get around now, instead of crawling so much. He can turn them and get them to go just about anywhere he wants. He's getting pretty fast and loves to show off his new skills.

He has also started climbing some, and can get in and out of any little chair we have. You can tell he's pretty pleased with that new skills as well.

We passed on an old camera to Tyler, but both of the boys like to pretend to take pictures of us.

I walked into the front room and found Andrew like this one day! Like I said: enjoying climbing.

We went to the reservoir for a cookout last week with Grandma Shell and Papa Steve last week. Ty is definitely following in the tradition of his dad and Papa loving the outdoors.

With school out, I've been able to move all my piano lessons to the mornings and I only teach 2 days a week. I also take the boys for a walk on M-W-F in the morning. I love the new summer schedule. It does mean getting out of bed earlier, but I love having the rest of the day open for my plans or even just lounging around with the kids.

Ryan has been getting lots of hours at work the last few weeks. He always gets up early for work, but now he stays a little bit later. Nielson's is still waiting before they build the shop for the PRV testing, so Ryan is doing mostly welding still. He has been able to go help in the oil fields a little bit and to work on other projects for the company. I think he's enjoyed having a little variety to his work.

Last weekend we went up north and got to visit with Bonnie and Skip for a few days while they were here. We had a baby shower for Bonnie too. I'm so excited for her and Skip!

Ty has recently mastered counting 1-10. He counts all the time now. Even Andrew has picked up on the tones, and follows suit by trying to count as he plays. Ty still mixes up colors sometimes, but for the most part knows them. I love watching him learn.

Andrew has had a good month. He had a rough few days after the dilation at the end of last month. After about 3 calls to the surgeon, a trip to Riverton for an esophagram, and lots of discomfort for Andrew, we added a new medication for his reflux. I've felt like the Prevacid hasn't been enough for a few months, but after adding zantac Drew is doing much better. I still notice some discomfort, especially if I miss even one dose of either medication, but it's much better. He will usually grab at his chest, or pull at his throat when he's having what I suspect to be heartburn.

I also had an ah-hah moment this morning. Andrew hasn't been sleeping through the night for a while now. It's become part of life that I wake up and find Tyler's binks at least once, and wake up with Andrew at least once every night. I haven't really been able to say why Drew has been waking up though. I usually put his blanket back on and give him his bottle, then he'll go back to sleep. Last night he slept all through the night! I got up with Tyler and Andrew was still in the same position he had fallen asleep in, which never happens.

So what was the difference? I always have to check the formula pump in the morning, because lots of times it doesn't alarm when it's empty and will just pump air into Drew's stomach until I turn it off. So I went in to check the pump, and while the bag wasn't empty, I noticed that part of the tubing was clear. There is a port on part of the tube that popped open and I had "fed the bed". So my conclusion to this sleeping issue: Andrew's reflux is keeping him from sleeping well. His stomach stayed empty all night, so he slept! I love when I get to sleep too!

Happy Birthday Tyler!

Tyler turned 3 on the 15th. I am amazed that's time has gone so fast! For his big day we took a trip to the zoo. Grandma Nina and Grandpa Mel came with us. Along with Grandma Anderson, Aunt Joyce, Nicole, Reese, Amanda, and Peyton. We had a good time. The weather was just right: warm and sunny. Tyler really enjoyed looking at all the animals.

Afterwards, we went back to Hooper and had cake and ice cream. Tyler has now realized what presents means, and is very fond of receiving them.

The goal was a cookie monster cake. It didn't turn out quite like I'd hoped, but Tyler still liked it.

Tyler has been making us smile tonight. He’s such a character! He had a hefty dose of sugar this afternoon, so he’s been VERY energetic. He kept saying over and over, “I not a puppet. I a real boy!” He likes to watch Shrek, so that’s where he learned it.

We have been helping him to say prayers lately, and he was very excited about praying for dinner tonight. He had to wait until dinner was ready, and then Ryan helped him. It went something like this:
Ryan: Thank you for this day.
Tyler: Thank you for nursery.

Ryan: Thank you for this food.

Tyler: Thank you for church.

Ryan: Please bless this food.

Tyler: I like nursery. (still in prayer tone)

Andrew had a follow-up visit with the Genetics specialist this week. The doctor saw him playing and asked how he was doing and said he's confident that Andrew has VATER. Which is just the initials for a group of birth defects that group together often. Andrew has Tef, Esophageal atresia, and Renal deformities. That group is sometimes part of chromosome problems as well, so the doctor wanted to make sure that Andrew didn't have any other problems beyond that, but said he is confident that he doesn't have any genetic problems.

I learned from the doctor that Andrew's type of birth defect occurs when the embryo takes some sort of hit, sometime between conception and 20 days. He said it could be something like a minor illness, even a low fever that I didn't even realize I had. The experts really don't know what causes it, and because it happens so randomly and early in gestation they will probably never find out. The good news is that it's not likely that Ryan and I will have another child with EA/TEF and it's not likely that Andrew will have children with these problems either.

Andrew also had another dilation yesterday. Things went well for the procedure, but he's had a rough time since. I think he may have a virus that's upset his system. He's not been interested in eating, has been throwing up, his reflux has flared up, and tonight he has low fever. He was very uncomfortable, so Ryan gave him a blessing and he's been able to go to sleep now.

Otherwise Drew is doing great. He's making progress toward walking. He likes to walk with push toys, and has figured out how to turn them so he can go where he wants to now. He's also been practicing going up and down stairs. He gave the porch steps a try this week while I was planting flowers. He made it up and down once, but the second time he stood up against the house and ended up falling down the last two steps. He got a pretty nice scrape on his forehead and nose, but was fine otherwise.

He's also added some new words to his vocabulary including cookie and see-ya. He yabs a lot when he plays and certainly seems like he knows what he's saying. He definitely understands a lot a what we say. I like saying, "Andrew, you want a bath?" He'll take off crawling to the bathroom every time.

I love my boys!!

Redecorated!

I have been wanting to recover my couches and paint our front room for a long time. My mom had made slip covers a few years ago, and did an awesome job, but didn't like the fabric once we had it together and they faded pretty fast.

So with part of our tax return I bought myself new fabric. I used the old slip covers as patterns and put these together. I am pretty proud of my work! I learned a lot in the process and really like these. The fabric is like micro-suede.

I searched and searched for the fabric to do pillows. I found this and loved it, looked more, but came back to this one. So I taught myself how to make the covers for the throw pillows. Ryan helped me make cornice boxes to go about the windows, and then I recovered my cedar chest.

I got a really big mirror to put above my piano. I am planning on hanging family portraits above the love seat, but need to get some new pictures.

Our land lord paid for the paint. (My first time painting too.) So now we have a room that Ryan and I both really like.
Ryan and I saw this cute sand box a few months ago, and knew that we wanted it for the boys to play in this summer. We almost couldn't find it at the store, but they had just moved it and apparently the sales lady didn't know they had these. Today we drove out to the desert and got sand to put in it. The boys had a great time playing in it, until Ty got a little too excited and ended up throwing a shovel full of sand into Andrew's face and open mouth. Once Ty learns to not throw the sand, I'm sure they'll be spending a lot of the summer in the sand box.