Luke's Vitalstim

Vitalstim has been going well for Luke, but he is still aspirating. At least he is becoming less averse to having things in his mouth, and most of the time actually likes the games his Vitalstim therapists play with him. The plan at this point is to do another swallow study after 30 therapy sessions which should be around the beginning of December and see if he has made any improvement in coordinating his swallow. Then we are going to take a little break and go back to Vitalstim after Luke has had a few more surgeries, probably sometime in Spring. We have a lot coming up and I owe you all a big post about Luke's last ENT surgery and visit.

Here are a few photos of Luke having Vitalstim. I am amazed at the stuff they can get him to tolerate orally that I haven't been able to. Patience, patience, patience seems to be the key.

Halloween photos

We had a fun Halloween this year and even got to go to a party at Lara & Daniel's house.

Sam as the Pokemon Marill, Luke the pumpkin, Oona, a little witch,
& Gus as Pharoah from Yu-Gi-Oh

The pumpkin was a good choice for Luke because it was so warm.

Quite an honor

Sorry it has been so long between posts. We have a lot of things to update about and pictures to post, so I will try to get to it soon.

I wanted to start with a surprising honor we received last night. We were invited to The ARC of Shelby County's annual awards banquet, where our family was given the "Inspirational Family of the Year Award". We felt so honored to be chosen for this award mainly because it means that people and an organization that we respect so much, think highly of us too. I was especially glad for Sam & Gus, because they were so proud. There are a lot of things that Rob and I don't get to do with them and for them and so many times when Luke's needs come first because they are medical and more pressing. So this award was like a recognition of the sacrifices Sam & Gus make and the good-natured way in which they make them.


One of the most wonderful things we have found on our journey since having Luke is his therapists and the other members of his Early Intervention team. Between The ARC, The Bell Center and Children's Hospital over 2 dozen therapists have worked with Luke and we have not had a bad experience with any of them. Each of them is special to us for different reasons. One of the things that I love about Luke's ARC team is how accessible they are. I don't hesitate to call any of them if I have a question or need help. We never have to feel like we are in this alone - we always have backup. We know too Luke isn't just another patient to them. They care about him and us, and I am sure they feel the same about the other kids they see. It can be easy to get discouraged about how long it sometimes takes for Luke to reach milestones or achieve goals. But his therapists are always so encouraging and help keep us focused on all the progress Luke has made and is making every day. If any of you read this, I hope you know how deeply we appreciate the contribution you make to Luke's life and to our whole family.

In Memory of Lucas Weindorf

It has been a while since I have posted, and I would much rather not be posting under these circumstances. Lucas Weindorf lost his battle against Pulmonary Hypertension today. He was almost 17 months old. Rob and I are both so very saddened by his loss. Lucas and his family mean a lot to us. I thought our boys would grow up together. Even though we live far apart, this wonderful age of technology allows us to make friends and share experiences with people we never would have met before. Lucas' mother, MK, has been a great support to us as we have shared this journey through CHARGEland. If you would like to read more about Lucas or leave a message for his family, please visit their blog at http://mkweindorf.blogspot.com/


Lucas was such a beautiful, sweet boy. We will miss him so much.

G-tube update

Luke did get his g-tube on the 21st like we expected. It almost didn't happen since surgery had left him off their list, but a terrific nurse got it sorted out right at the end of the day on the 20th. Luke also had his second orchiopexy in which brought down his right testicle. He still has to have one more surgery where they bring down the left testicle which will probably happen in February or March next year. This surgery seems to have been Luke's most difficult so far. He stayed in the hospital for 4 days and had a good bit of pain, transitioning to OTC pain medicine (Tylenol) only on the last day.

Getting Luke up to speed on his g-tube feedings has happened more slowly than we expected. His goal is 5 bolus feedings of 6 ozs. each over the course of the day. This puts the feedings at about every 3 to 3.5 hours. He is currently at 1 feeding of 6 ozs. and 4 of 5 ozs. and they aren't bolus yet, but given by a pump over 45 minutes to an hour. At first Luke was throwing up anything over 4 ozs. like his stomach was just too full. We put him back on Reglan to help speed up his digestion and the throwing up has gotten much less. Unfortunately he got a cold in the last week and some of his hard coughing is making him throw up, which happened a lot in the past with his bottle feeding. The good news is that Luke already seems to have gained a few ounces going from 17 lbs. 6 ozs., when he was admitted on the 21st, to 18lbs. 1 oz., yesterday, or from 7.9 to 8.19 kg (both with clothes on). So if his weight gain is good, the nutritionists aren't as worried about getting his feeding up to goal.

With the exception of what is lost through throwing up, Luke's feeding is finally really consistent. The pump is wonderful for that. It is so easy to use and taking Luke out while he is eating is a breeze. The pump has a little back pack and it just comes right along with us. Now Luke can eat in the car and the stroller and, the best part, even when he is asleep! Another benefit of the g-tube that we have noticed is that Luke is finally well hydrated and actually producing several wet diapers a day. And the strangest thing of all is that Luke's constantly draining ears have almost totally cleared up. His left ear (the one that was cleaned out) has nothing draining, and the right can only be seen when we clean out his ear with vinegar water each night. Now, so far, we aren't seeing a big difference with his hearing, but I would have to think that there is at least some improvement. Luke did make a new sound yesterday - a very brief buh, buh, buh. When he has another booth test next week, we'll see if they can tell a difference.

The other news is that Luke finally got into VitalStim. He starts next Monday, so I will keep you all updated about his progress there.

Da, Da, Da, Da, Da...

I don't know if I mentioned it before, but Luke has been making a lot more noise lately, even without his PMV. And now when you put his PMV on he usually starts to make sounds right away. His favorite seems to be da, da, da... I took a few videos in the hospital of him making sounds. He even seemed to be queing sounds from me sometimes. So we are going to keep working on that. I apologize for the general shakiness of the video. Luke has started reaching for the camera anytime I get it near him - how wonderfully typical!



The day Luke had his swallow study, he also wore the PMV for the speech therapist. And it was an awful day all around, because he did terribly with the PMV. He did breathe through his mouth, but it was a real strain and he cried. The speech therapist thought there was some kind of obstruction between the trach and Luke's mouth, and that he should not really wear the PMV much if at all. And to be fair to us, I have never left the PMV on when he has had that kind of reaction, which has not been very often. But since that day we have not been using the PMV much. So when Luke was in the hospital last week I took advantage of the fact that he had an oxygen saturation and heart rate monitor to see how he responded physically to the PMV. He didn't cry or get upset or even seem to mind at all that he had the PMV on - in short, nothing like the day of the swallow study. Luke had the PMV on for over an hour and he did great. His sats. stayed between 98 and 100 and his heart rate was in the 120's. It gives me more confidence to know that I can tell when he is distressed and can remove the PMV. But there are definitely times when he does well with it and he should keep using it.

We're home...

... with no NG tube. Even with the x-ray machine the doctors couldn't get a tube to go down Luke's nose. I knew his anatomy was odd, but not this odd. It makes sense now that Dr. Hill is having such a difficult time with the choanal atresia. The radiologist says that he can always get the tube down with the x-ray machine, so he was quite surprised when it wouldn't work.

So the plan now is to just keep feeding Luke orally until he gets his g-tube next Thursday. As far as we know there is no problem combining the g-tube surgery with the urology surgery. They said Luke will have to stay for 3-4 days after the surgery to get his feeding schedule worked out. The plan now is to work him up to about 8 ozs. 4 times a day. This would be perfect for us, so I hope it works out. Also, Luke could keep having some solids by mouth to keep his feeding skills, and any calories from that would be bonus. He was "officially" diagnosed as "failure to thrive" on his hospital discharge papers, meaning he is under the curve for his weight compared to his height. His weight is apparently average for a 6 month old and his height for a 9 month old. The nutritionist wants Luke to have 900 calories a day to start to catch-up and we are only getting 600-700 in him right now by mouth. So Rob and I are confident now that the g-tube is the best decision for Luke.

Luke has tons of appointments next week - Dr. Hill, the dentist for the first time, and his 18 month ped. visit. I will try to update on some of those things before Thursday. Sam and Gus also want to join the cub scouts, so we have School Night for Scouting on the 19th. I hope they enjoy it. At registration they were very excited about going fishing and camping.

Hospital update

Luke was admitted to Children's today and he is doing well. In true Luke fashion though, things don't always go like you would expect them to. Three different nurse tried to put in the NG tube and they can't get it to go passed his nose. So the next option is to put it in under x-ray. Since it is so late, they will probably do that tomorrow. We will let you know when there is more news.

GI Update - Children's here we come

Luke's appointment today with GI went fine. It was what we expected - Luke needs a g-tube. The main reason is for the aspiration, but the doctor said even without that he would probably need it for hydration and weight gain. The good news is that Luke has gotten longer 29.5 inches, but he is still right around 17lbs. which means he is under the growth chart even for his height.

The part that was a bit surprising is that after waiting 2 weeks for an appointment with GI, they want Luke to go in the hospital right away and have an NG tube placed until the surgery for the g-tube can be done. For those that don't know, an NG tube goes from the nose down into the stomach and isn't surgical, the g-tube is placed in the stomach surgically. I have no idea how Luke is going to do with the NG tube. I will be surprised if he doesn't try to pull it out, but we will see... The doctor said Luke will probably be in until Friday. Rob and I need to be trained and we need to come up with a good feeding schedule. This will be a whole new world for us, hopefully it won't take too long to get adjusted.

Tomorrow morning Luke will have his last bottle. I am a bit sad about giving up this cuddling time. Of course it happens for all babies, but since he is my last I feel sentimental about it. Luke will be off all oral feedings for a while, but we hope that it won't be too long before he can start eating some foods again.

I will try to get Rob to update while we are away, but if he can't (work and wily twins take up a lot of time) I will write again after we get back home.

Sam and Gus start 1st grade!

Now a happy post! Yesterday was the first day of school and Sam and Gus' first day of first grade! We went to meet their teacher on Tuesday. And she seems lovely. The boys both raved about her yesterday afternoon. They are so excited to be back at school, they haven't even complained about having to get up early again. Here are a few photos from "meet the teacher" and the first day.

Sam at his new desk

Gus at his new desk

The boys with their first grade teacher

Their favorite pose

What cool new backpacks - everything has got to be Pokemon. I dressed them for the first day, but today they chose and they each picked out their new Pokemon shirt.

First grade!

First grade!

Swallow study failure

On Tuesday the 29th (my birthday) Luke had a swallow study with a speech therapist at Children's to evaluate him for Vitalstim. Vitalstim is a swallowing therapy where electrodes are placed on the neck and the electrical stimulation from them strengthens the muscles used to swallow. Luke's last swallow study in April wasn't great, but he did pass and did not aspirate during the test. We know that he has been aspirating though because we see evidence of food coming out of his trach. It is only sometimes with solids, but has gotten to where it is most of the time with his bottles. We suction Luke a lot when he is eating and he has never gotten sick, but there is always the possibility, so Rob and I worry a lot about this.

Since we know about the aspiration it shouldn't have been a surprise to me when he failed the swallow study. Of course he fail on the first bite of the thickest liquid, so that makes just thickening his formula out of the question. So... it looks like after all this time Luke will have to get a feeding tube put in his tummy. It isn't a foregone conclusion because we haven't seen GI (the tummy docs) yet, but it is the recommendation of the therapist who did the study. And I could tell she felt very strongly that it isn't safe for Luke to keep drinking liquids at this point. Luke's GI appointment is at 1 on Monday. I forgot to say in my last post that Dr. Hill noticed some evidence of reflux too, so we have to have GI check out that as well.

While I was heartbroken at first to think that Luke has to have another surgery, another stoma, another piece of hardware. And that this means another step away from "typical" for Luke. Rob and I both see that there might be many advantages to the g-tube. We struggle all the time with getting Luke to eat enough and gain weight and a tube should help with both of those issues. Our biggest day to day challenge and stress is the worry over aspiration and calories, so it might make all our lives better if that stress is taken away. We tend to spend much of the day trying to get Luke to eat enough, so we might see relief from that. Also Luke seems to have more energy and make more advances in motor development when he is eating well (which doesn't happen often) and we would love to see an increase in that area. So Rob and I find ourselves in the position of realizing that something we so didn't want to have to do might be the best thing for everyone. At least the g-tube isn't all or nothing like the trach. Luke can still eat orally with it, but he doesn't have to. And with all the surgeries and sickness having a guaranteed way to feed Luke would be great.

Needless to say my birthday wasn't the best. But I was lucky to have one of Luke's therapists, Brooke, go with us for the test. She looked after Sam and Gus when I lost it and answered every question I could think of for an hour or so after the test was over. She has always been there for us with Luke's feeding challenges, and we are so lucky to have her in our lives. Luke has 2 wonderful sets of therapists, one with Shelby County ARC and the other at The Bell Center, and I think they are the only reason we make it through this medical maze most of the time. I hope they know how much we appreciate everything they do.

Surgery results

Luke's surgery on the 25th went fine - read into that not bad, but not as well as we would have hoped either. Dr. Hill was only able to dilate one nostril, because there wasn't room on the other side to make it any larger. The bronchoscopy results were pretty normal. There is a small granuloma (bit of scar tissue around the trach opening) and a bit of collapse from having the trach. Dr. Hill didn't think either of these warranted any concern or should interfere with Luke's PMV use. That was the first part of surgery and took maybe a half-hour. Then it took two more hours for Dr. Hill to clean out Luke's left mastoid - a porous bone behind and below the ear. I knew they would drill back there, but I didn't realize the incision would be around the whole back of Luke's ear. They pulled the ear and ear drum forward and drilled out the mastoid to try to clean out infection and debris from all the fluid. Luke looked like he had a Frankenstein ear.


Because Luke was under for so long he needed a bit of oxygen after the surgery to keep his sats up in the high nineties. They were in the low nineties without the oxygen, which is apparently not good enough for the recovery room to release him. I thought we were going home, so I was a bit worried when the nurse told me Luke's room was ready and they were giving him a breathing treatment in recovery. Turns out we had to stay so Luke could be weaned off the oxygen. And the nurses in recovery didn't understand that Luke is always "junky" and sounded funny and raspy because he was dry and needed some saline. It was a long night with all the unnecessary alarms. But we got to come home on Saturday.

Long overdue update

I need to post quite a bit about what has been going on with the boys this summer, but I only have time right now for a short update. Luke is having another nasal dilation tomorrow and Dr. Hill might clean out his left mastoid cavity (all the fluid in his left ear). The dilation in one day surgery, but we might have to spend the night for the ear. So, either Rob or I will update about the surgery as soon as we can afterwards. Luke is also having another swallow study done next week to determine if vital stim swallowing therapy would help him stop aspirating. Promise we will update after that as well.

Sam and Gus have just gotten back from their second trip to the beach with Nonna and Papa. They went to Vacation Bible School while they were there and had a great time. It was really quiet around here without them, so we are glad to have them home. They start 1st grade on August 7th and we get to meet their teacher on the 5th. Summer has just flown by. It will seem strange not having them home with me. But Sam and Gus are both ready to go back to school.

I will post photos soon, since I don't have time now. But I did want to show you all this short video I took of Luke today. He was making more noise this morning than usual, so I was trying to get a good video of that. It didn't work out, but I did get this of him crawling. This is the first time I have seen him crawl on his own. It is only a couple of paces, but I am so excited that Luke is finally interested in moving on his stomach. You can see too that he loves his beads.



Promise I will post more soon!

Luke's port surgery

Today Luke had a CT scan and had his central line removed and a port put in. We would rather have nothing, but Luke is so hard to get an IV in that it will save him pain in the long run if he has IV access without having to try to find a vein each time. Before the central line they routinely had to stick him 10 to 20 times to get an IV. And since he is still getting surgery after surgery, we need to keep access as easy as possible. The port is really just another type of central line, but it is under the skin rather than hanging out. But it should be so much better for all of us than the line he has right now. After the site heals, the port will be under the skin and Luke won't need a bandage. He will actually be able to have his chest washed for the first time in 9 months. We will only have to do maintenance on the port once a month, rather than once a day like we are doing now. Right now we have to try and be so careful too not to pull the line or get it wet, and both things can be really difficult. Luke has been trying to learn how to commando crawl lately and the line has been right in the way. Needless to say we have been really looking forward to this surgery and are really excited to have it done. They put the port on the right side on the upper part of his chest. Luke is home safe now, but a little sore and groggy.

The CT scan is of his ears to check the fluid in his mastoid cavity. Since his ears have had more awful drainage than usual for the past couple of months, Dr. Hill might go ahead and clean out one of Luke's mastoid cavities during his next dilation surgery, July 25th. It would probably only be a short term procedure, but it could make a difference. Sometimes once an infection has begun the mastoid actually gets infected and becomes a new source of infection rather than just a conduit. Dr. Hill will be able to compare this CT to the one Luke had done in the fall and see if anything has changed. In the fall both mastoid cavities were full of fluid, so I would expect that they will see the same thing today. We will let you know when we get the results.

Unexpected surgery for Candi

I had a wonderful visit with my friend Jodi this weekend. I went down to her house in the middle of the day Saturday, spent the night, and then came home on Sunday. Sam and Gus were at the beach with Nonna last week having a vacation. So Rob took care of Luke and I spent my third night away from Luke since he was born. On Sunday morning my back hurt, but I thought that was just from sleeping in a bed that I wasn't used to. As the day went on my stomach hurt. I had to stop at Walmart on the way home and pick up a few groceries and by the time I left there it felt pretty unbearable. When I got home I told Rob I had to go to the doctor, and during the 5 minutes it took to drive to the doctor's office I decided not to stop and to head straight to the ER. By the time I got there I was hyperventilating and having a panic attack. The pain was really awful - kind of like labor, but persistent not in waves. At St. Vincent's they did a CT scan and discovered I had an 8mm kidney stone that was trying to pass. They gave me a shot, which worked for the pain and sent me home with a pain killer prescription. All the pharmacies were closed, but luckily I had some pain medicine left since I never take all that they give me of that. Sam and Gus got home about 10:15 because there had been a wreck on the interstate, so we got them settled in and to bed quite late. The pain pills were working some, but not really well. At about 1:30 or so I started throwing up. After that I kept throwing up every 15 or 30 minutes, sleeping a little in between. I took more pain meds, but couldn't keep them down. I also drank water, but that didn't stay in for long either. At 8 I called the urologist suggested by the ER and went right to his office. By the time I got back there the pain was full force again, so after waiting in the lobby for about an hour I saw the doctor. He immediately did an x-ray and said that the kidney stone was too big to come out on its own and he would have to remove it. They gave me pain meds again, so after that the worst of the pain was over. The doctor sent me over to St. Vincents and they did surgery in a couple of hours. Thankfully Mom was able to come get me at the doctor and be with me since Rob was at home with the boys. She and Gary went to get my car and took me home. And basically I slept the whole time after the surgery. I already feel much better today and think that by my follow-up appointment on Thursday I should be back to normal. Hopefully the doctor will be able to tell me what kind of kidney stone it was so I will know what to avoid in the future. It was right up there with labor as something I never want to experience again. I think it had been coming for a while, but since this hadn't happened to me before I didn't know what was happening. A few weeks ago I had a really bad night of stomach pain and vomiting that I thought might have been food poisoning, but I couldn't figure out from where - now I realize it was the stone moving, but the pain stopped, so I didn't think about it again.

I am still groggy from the anesthesia, but I realize that this is a good experience for me to see what it is like for Luke. I can understand now why he is not quite himself after surgery, and that it takes longer to recover than I would have thought. He actually does really well getting back to normal - better than I am.

Luke's new voice...

Luke got his PMV on Friday. It is slow going, but we hope it won't take that long before he gets used to it. He usually doesn't seem distressed when he is wearing the PMV - he just keeps playing or doing whatever he was doing. But he is also not breathing effortlessly yet either. He seems to have to keep his mouth open and he drools a lot. Luke also makes noises that sound like a duck or a cat purring. He blows raspberries too. He has made a few small vocal noises, but he isn't making much sound yet. What we have heard has been wonderful though and makes us anxious for more to come.

Here are a few short clips of Luke using his PMV. The first half-second of the first video Luke is making a vocal noise. Otherwise they are all breathing noises.

Luke's 3rd CA dilation

Luke had his 3rd CA dilation last Friday. Everything went fine, but Dr. Hill is still not sure how long it is going to take to get Luke's nose open enough to get the trach out. He wants to dilate again in July (the 25th) and see where we are then. The good news is that he is finally going to let Luke try a PMV - passy-muir valve or speaking valve. This is an attachment for the end of the trach that lets air go in through the trach, but out through the mouth and nose. This means air passes the vocal cords, so making sound is possible. If Luke is able to do this then we would move on to capping and then decannulation. It can take quite a bit of adjustment to get used to the PMV, so we will have to start very slowly at first.

Gus is Student of the Month!

Well Gus was very surprised and excited last week when he got the Student of the Month award for May. Now both boys have lovely medals to keep. We also met with their Kindergarten teacher, Mrs. LaRota, and decided that the boys should be in class together again next year. They did really well being together this year. They were always there for each other, but they played with different kids and weren't in the same groups, so they weren't dependent on each other. Being in the same class helps us as a family since it allows Rob and I to attend class events for both of them and to work with them on the same homework. And it also helps Sam and Gus have a little extra security in knowing that their brother isn't far away.



The boys also had their end of the year party and received their Kindergarten certificates. Today is their last day of Kindergarten. I will be happy to have them home again with me for the summer. I feel like I hardly get to see them anymore. But what are we going to do for the next 2 and a half months... I am sure all 3 boys will manage to keep me busy as usual.

Happy Mother's Day!

I had a really nice Mother's Day yesterday. I was surprised in the morning with several sweet gifts that Sam & Gus made for me - lots of handprints, drawings and love. We went to Nonna and Papa's and spent the day, and we all had a really nice time. I even got to take a nap after lunch, which was wonderful. Before, that would have kept me up at night, but not anymore. It was a beautiful day, so we took some photos outside.

Another tooth...

Gus lost his second tooth yesterday. It won't be long before the top two come out too and he will have a big hole in the front of his mouth. He doesn't seem to mind a bit though.

Some of our friends commented this weekend about Gus looking like Rob now. I know he has my eyes, but in photos lately I can start to see what they mean. I actually think he looks like Auntie Marjo in the top photo below. Rob says he can see Craig. Rellies, what do you think?

Hugs, kisses and playing ball

I just wanted to share one of the wonderful things Luke has been doing lately. He gets more animated all the time and lately Rob and I have gotten a special surprise. Luke has been hugging and kissing us (in a sense). He will put his arms around my neck and squeeze his hands to hold on. Rob and I both can definitely feel it is a hug. Now for kisses - Luke doesn't actually move his lips, but he has moved toward me with an open mouth for me to give him a kiss. He is a bit of a Mommy's boy too. After 3 it is only fair that one of them prefers me.

We had another wonderful experience last night. Luke played ball with us. He sat in front of me between my legs and rolled the ball back and forth with Rob. He especially liked when Rob would bounce the ball and it would hit Luke and land in his lap. (Don't get worried this is one of those new balls that is mainly holes, so it is easy for babies to pick up and hold.) We are still working on independent sitting with Luke, and this was the best he has ever done. First Luke wasn't strong enough, then he lacked balance, and lately he has had the ability, but throws himself back on purpose. Since he was occupied and had my legs as bumpers, he actually sat most of the time by himself. We can tell Luke is getting stronger all the time because he now loves to stand. He can stand by himself if he holds onto something (or someone) for balance. He even likes to dance. Something I never imagined for my little "deaf" boy...

Here is Luke standing. It looks like I am holding him, but I just have my hand behind him to catch him "just in case". He is also making this funny little noise he has been fond of lately. I think he really likes some things about having teeth.

Catching up

I know it has been a long time since I have added anything to the blog, so I have been trying to make up for that today. You will find tons of photos from Easter and several of Sam and Gus at school on their birthday in the 3 posts below. For some reason it has seemed especially hard lately to find time to keep the blog updated. But I really want to try to be better about it again because I like to keep in touch with all our family and friends. Plus the 3 Little Bees are changing so fast, that it is nice to be able to share all the things they are doing.

We had a long month in April. Luke wasn't eating well, we think because he was teething, and then he got the flu. Gus had been sick first and he ended up getting it again and we all had it at least once. Luke probably got it the worst though, spending a few days in the hospital. He had a high fever and was taking short shallow breaths so we got worried. Since he has a Central Line there is always a risk of infection and the doctors had to rule that out. They were also worried about pneumonia, but it seems his lungs just got "sticky" from having the flu and a few days of albuterol helped that go away.

Luke ended up not eating well for 3 weeks, and that always worries us. In the fall Luke weighed 14lbs. 10 ozs. (about average for a 4 month old) and he had only recently gained to just over 15lbs., so we really didn't want him to lose weight. The good news is that he didn't lose too much and is still right around 15lbs. While Luke was in the hospital we saw a nutritionist who wants us to transition Luke to a soy pediasure type drink to add more vitamins and calories. He needs to eat around 700 calories a day to gain, and he is actually doing that right now, so I hope to post about more weight gain soon. Luke's feeding issues are actually some of the most stressful issues in his care right now. Mainly because it is constant - counting every calorie, working to keep Luke from gagging and throwing up, trying to push table food, trying to transition to a cup. Feeding Luke is also constant in all the time that it takes. Sometimes it takes him an hour to eat his baby food, and then another half an hour to take a bottle, so it seems like life revolves around Luke eating. Needless to say, I will be happy when Luke moves on to table food and a cup and eats meals with the rest of us.

Happy Birthday Sam & Gus!!!

Today was Gus & Sam's 6th birthday. Now that everyone is feeling good again, we were really able to enjoy the day. Both boys got recognitions and school and were very proud of that. They also had their names mentioned in the morning announcement and got to were a special sticker in honor of their birthday. After school they opened their birthday presents from Mommy and Daddy before they went out to play a soccer game. Their favorite presents were scooters, gameboy games and a Lego Bionicles set. After they game we went out to dinner with Nonna and Papa at the Outback and all ate too much. The waiters brought them ice cream to eat with their cupcakes from Nonna for dessert and then sang Happy Birthday. We were all exhausted by the end of the day.

Gus and Sam with some of their presents

Sam is doing a good job holding Luke

The boys playing with their favorite toy - gameboy

Even though they are older now I still love their cute feet

Gus lost his first tooth a few days before his birthday on April 24th

If you look at this photo close up you can see that Luke is getting a lot of new teeth too

Sam is Student of the Month!

Sam is quite excited because he was picked as Student of the Month for his Kindergarten class. We are very proud of him. Rob, Nonna, Luke and I were able to come watch the awards ceremony. Gus was very happy for Sam, but both boys wished they could have been picked together.

Happy Easter!

Sam and Gus came back from the beach today with Nonna and Papa and we all had a nice Easter dinner together. The Easter bunny was good to the boys and brought them all lots of fun things. Nonna and Papa also spoiled Sam and Gus while they were away. It's hard to believe school starts again tomorrow and we are back to being busy again.

I finally downloaded the photos from the camera, so here are a few (wink, wink).

Luke didn't seem to like being outside in the wind

Nonna & Papa with Luke

Nonna & Papa with Gus & Sam

Mommy with her boys

Daddy with Luke

The many faces of Luke