Merry December

We're coming to the end of December and I've only done one blog post this month. That's probably because I haven't taken many pictures of the boys, which I know is a cardinal sin with boys so young and cute as mine. We've been pretty busy this month. Here are a few things we've been doing:

The number one thing that keeps me busy is taking care of 2 boys. Between taking care of them and basic housework, it's a miracle I get anything else done at all. But they're so cute, it's worth it. I spend a lot of time with them like this, changing their diapers:

Dallin usually hold's Connor's hand when they're laying next to each other.

I plan to take side by side pictures like this occasionally to compare Connor's growth to Dallin's. We'll see how long it takes Connor to catch up.

We decorated our house for Christmas.

Dallin loved helping his Dad.

My brother Neil and his family stopped by to see us a week ago. They brought some presents for us to open and it felt like Christmas morning.

Dallin was so excited to open his presents. He was happy to help open (and play with) Connor's presents too. It helped him get in present opening mode for tomorrow.
More than the presents, Dallin loved playing with his cousins and aunt and uncle. Neil was very tired after a long drive from Arizona, so he was trying to take a nap on the floor. But the kids thought it would be more fun to climb on him.

The month has been full of doctor's appointments. New foot orthotics for Dallin (3 appointments), Fluid in Dallin's ears and a round of antibiotics (2 appts), and a 2 month check-up for Connor. Connor is growing so quickly. He's getting so chubby and already growing out of some 0-3 month clothes, like this awesome shirt:

And the matching shoes don't feet his big feet anymore. Sorry Julie.

At 2 months old, he now weighs 13 lbs, 4 oz (a weight Dallin didn't reach til well after 6 months), putting him around 80th percentile. Having gone through what I have with Dallin's weight, I don't really put much importance on percentile numbers. But's it's kinda nice to have a big baby for a change and to not have people freaking out about his weight. At his appointments, we get to talk about little things like his dry skin and weird toe nail, rather than weight gain and heart problems.

Connor has started smiling and it is one of the cutest things I've ever seen, tied for first place with Dallin's first smile. I'm having a hard time capturing photographic evidence.

This is the best I've gotten.

Dallin's vocabulary is growing daily. He picks up new words so well. They're not perfectly formed, clear words yet, but we can usually tell what he wants. He's now mastering 2 syllable words like Connor and cracker (which sound very similar is Dallin-ese.) He has quickly learned the word and sign for "asleep" because he's always trying to cuddle Connor while he's asleep, and the last thing I want is a baby who was woken up early. Similarly, he's learning "hurt" in an attempt to help him understand that laying on top of Connor will hurt him.

I'm not sure where he learned this sign since we weren't practicing this one with him, but he picked it up somewhere and pulled it out when we were saying bye to his Grandma Crapo on the phone.

Of course, after trying to make him perform for 5 minutes, his talking and signing quality was diminishing for the video, but you get the idea.

We hope you all have a Merry Christmas tomorrow. I promise to take lots of pictures so I'll have something to post about.

It's a Christmas Miracle!

Dallin had a check up with a cardiologist last week. This was his first time seeing a cardiologist here in Indiana. He got an EKG like he has gotten for every visit and everything looked normal (like it does every time). We met with the doctor, talked for a bit and she was pleased to hear how well Dallin has been doing. (Her file on Dallin included all of his recent hypercalcemia adventures in the hospital.) She asked when the last time was that he had gotten an echocardiogram (heart ultrasound). I realized that he hadn't had one performed since he was 2 months old and still on oxygen. Since it had been almost 18 months since his last echo, she decided it would be good to do one that day while we were there to see how things were going in there.

He did so much better this time with the echo than he did when he was a screaming newborn. He really just wanted to play with the ultrasound wand and the goo on his chest. After the technician finished, she called the doctor in to look at the images. The doctor saw them and wanted to look at Dallin herself with the machine. That worried me a little, thinking that she saw something that might look serious and wanted to find it for herself. She spent a few minutes studying Dallin's heart and then told us what she saw.

She said that his narrow pulmonary valve (the whole reason why he has to see a cardiologist) is barely even there anymore. He still has a slight heart murmur, and the narrowing is still there, but it's very slight. She said she would categorize it as VERY mild pulmonary stenosis. We were so happy to hear that great news. His check ups with the cardiologist have been every 6 months, but she said that we didn't need to come back for another 9 months, and if things were still looking good then (as she expects them to be), we might lengthen the time between visits to a year. I'm so happy about this! It's great to hear that something is going well. Most people with Williams Sydrome will have either aortic stenosis or pulmonic stenosis. With aortic stenosis, it usually gets worse over time as the child grows up. We feel very lucky that Dallin only has the pulmonic stenosis, because that mostly gets better with time and is usually cleared up on its own in infancy.

Dallin has also been doing very well with his calcium levels. He gets his blood drawn every few weeks (it sucks, I know) to monitor the calcium. His most recent number from last week was 9.9 for his total calcium. The normal range is 7-10.5. He's finally in the normal range for something! The kidney specialist said that now that his calcium is at a good level, we can start cutting back on his medication doses and see how his levels continue to do with less medication. You have no idea how happy that makes me, even though it has only cut out 2 medication doses. I'll take what I can get.

In short, Dallin's heart is great, his calcium is low, and he's gaining weight.

It's a Christmas Miracle!

(No, Dallin did not get really huge, it's just a miniature tree.)

What a week!

Last week was not spent quite how I planned to. On Tuesday, Dallin had an appointment with the Nephrologist (kidney specialist) at the children's hospital in Indianapolis. That's a little over an hour from us, so it's not too far, but you have to plan for it. We saw the doctor, and he got his blood drawn, an ultrasound of his kidneys, and gave a urine sample. (Is it weird that I would rather he get blood drawn than a urine sample? At least with the blood I just hold him while someone else pokes him, but I do not like being the one who has to peel a very strongly adhered bag from his body.)

This was the first time meeting with this doctor and Dallin's first time seeing a Nephrologist since the one in Utah 2 months ago. It went pretty well. She was mainly concerned with his blood pressure being high and about his diet (just like everyone else.) I mentioned the low calcium formula that was being mailed to us and the plan to start him on that as soon as it got to us and she agreed that it would be good to start him on that. The doctor told me she would call in a few days to go over the lab results with me, and then we left.

It was about 5:30 pm and I had just gotten home from Indianapolis and picking Mckay up from school when I got a phone call from the Nephrologist. She said that Dallin's lab results had come back and that the calcium levels in his blood were extremely high. To give you an idea of how high, a normal calcium level would be from about 7 - 10.5. His calcium level was 15.2. She said that we needed to come back immediately to the emergency room. We talked to her for a few minutes and asked if it was really that necessary to take him to an ER an hour away. She felt it was. We called a few other people, including our nephrologist in Utah, and they said we should go to the ER.

We packed a few quick items, got in the car, and drove all the way back to the hospital. The doctor told us that she had notified the ER and that they would be expecting us. We got to the ER and checked in and they seemed to be in no hurry. We told them that the doctor had said they would be ready for us, but the ER nurses said they didn't have any beds and we'd have to wait. After waiting for an hour, they took us back. I've decided that if you need to go to the ER you should go in an ambulance. You get much faster service. Both times we've had ER/ambulance experiences (one for Mckay, one for Dallin), a room was ready for us as soon as we pulled up. I do not like being told that I need to rush my son to an ER, and then waiting around for an hour.

They got him a gown and a bed and still seemed in no hurry to do anything.

They asked us a ton of questions. They almost seemed more concerned about his other issues (low weight, not eating "normal" food, not walking, developmentally behind) than his calcium levels. I wanted to say, "Look guys, we know exactly why those other things are happening and they are being treated just fine already by the proper medical assistance. The only thing I need from you is an IV and drugs to lower his calcium!"

Dallin of course had no idea what was going on. He was just happy that he got to stay up past bedtime and play with his daddy.

Finally we had some nurses come put an IV in his arm. More nurses volunteered for the job than was actually needed. They just wanted to come play with Dallin.

At 1:30am we were finally admitted to the hospital and got checked into a room. We all tried to get some sleep, but it's hard to sleep when nurses keep coming in every 2 hours to take his vitals, give him medication, or draw his blood. And it was a shared room so we were woken up when they came in for the other patient too.

In the morning we talked to a bunch of doctors. This was a teaching hospital, so we had a lot of doctors "practicing" with us. And of course, Dallin is a medical rarity, so a bunch of doctors asked if they could come in just to listen to his heart or examine a patient with Williams Syndrome. I'm glad we could help them learn! Our team of doctors told us that the IV and medication he had was helping to flush the excess calcium out of his body. The blood test from that morning showed that his calcium had come down, but they wanted to get it much lower before releasing him. So we spent 4 days in the hospital waiting for his calcium to come down. Mckay talked to his teachers and worked out missing class so he could stay with us in the hospital.

Dallin was a good sport about the whole thing. He got really sick of being confined to a hospital bed, but he found ways to entertain himself.

Like eating the wires and IV attached to him.

He played with mommy and daddy.

He pulled the sensor off his finger.

He also did some not so fun things. He had to get his blood drawn 2 times a day. It was nice to see how his calcium levels were doing each day, but it was not fun to see him get poked so much. They always had a hard time finding a good vein. And once it was used, they couldn't use the vein again, so they were running out of places to stick him by the end of the week. One time they drew blood from a vein on his head.

He did not like that one very much. At least it was a really good vein and they were finished pretty quickly.

They also took his blood pressure a lot. He has always hated getting his blood pressure taken. Maybe it's the cuff squeezing him? I'm not sure, but he always cries. By the end of the week, he was so used to it, he wouldn't even make a sound when they took it. He would just smile and keep playing with his toys. His high blood pressure was related to the high calcium, so they wanted to get his blood pressure lower before releasing him as well. He is on a medication for it that has been keeping his blood pressure consistently low.

We didn't plan on being there that long and we did not bring enough extra clothes. The wonderful Ronald McDonald House organization saved our lives. They had showers, laundry facilities and a kitchen for families of patients to use anytime they wanted for free. They had snacks and meals every day made by volunteers, so we never starved. It is a great organization and I'm so grateful we were able to benefit from it. And we didn't have to wear dirty clothes the whole time!

Part of Dallin's medical plan for lowering his calcium was that we start him on the low calcium formula immediately and begin weaning from breast milk. I was already planning on doing this but not quite so abruptly. It's going ok though and he seems to be handling the change to bottles pretty well.

Saturday morning, the doctors said his calcium was low enough to release him. It was still a little high (12.2), but it would keep getting lower with continued medication at home and continued weaning to the formula. The medication that lowers his calcium also lowers his potassium, so he has to take medicine to keep his potassium up. We were released from the hospital with three prescriptions: calcium meds, potassium meds and blood pressure meds. He is supposed to have his blood drawn again on Wednesday to see how his calcium level is doing and a follow up with the doctor in 3 weeks.

Now we're home and Dallin is loving being able to crawl around and have his freedom back. He has to take medicine 3 times a day and the only way to get him to take it is to put it in his bottle. I'm trying to adjust to making and washing bottles all day AND getting the right medicine in the right bottle at the right time. It's a bit of a hassle.

It wasn't very much fun, but I'm glad we are getting his calcium situation taken care of. We had some really great doctors and a few great nurses in the hospital and that always makes things a little better. We were approved for Medicaid literally the day before all this happened, and I am so grateful for that! If it weren't for Medicaid, we would be in so much debt from all Dallin's medical bills.

This experience made me realize how lucky we were to be so close to family in Utah. When Dallin was hospitalized before at 3 weeks old, my siblings came to visit, brought us food and kept us company. No one could come visit us here since we're so far away from everybody and it got lonely. But we did appreciate the people that called to see how things were going.

So that was our fun experience! Now I'm off to do laundry and dishes and the things that were neglected for a week.

Cardiologist Follow-up

As many of you know, Dallin had some heart issues when he was a few months old that were resolved. The cardiologist wanted to do a follow-up with Dallin 6 months later to see how he was doing, and yesterday we went to said follow-up appointment. The nurse started by doing an EKG and Dallin did not like it at all. He had one when he was 3 weeks old and he cried then, but he was too young to squirm and try to get away. He did not like having all these little stickers on his skin that were being pulled. And he had to sit still long enough for the machine to take an accurate reading of his heart. He did not want to sit still.

And then he would stretch out his body like this:

and it would rip the stickers off and the nurse would start all over again.

Finally we got him calm enough to get a good reading. The cardiologist came in and said that the EKG looked good. She then asked me some questions about how he's been doing. I told her about his eating habits and his slow weight gain, and I showed her Dallin's growth chart. (Dallin's pediatrician was especially eager for Dallin to see the cardiologist again because she thought Dallin's weight issues might be related to his earlier heart issues.) The cardiologist listened to Dallin's heart with a stethoscope for a minute. Dallin really like her and stared at her calmly while smiling the entire exam. After listening to his heart, she said that she could still hear a heart murmur and the narrowing in his pulmonary valve. This information combined with his low weight led her to suggest a blood test. She wanted to do a chromosomal analysis for a particular genetic mutation that might explain these problems he's having. She said the lab could take about 3 weeks to come back and then she would let me know the results.

I was surprisingly calm through all of this and a little relieved. I'm glad that someone is really exploring his weight issue instead of saying that I'm just not giving him enough calories. Obviously, I'm not happy that his heart problems are still there since I thought his heart was just fine now, but I'm glad that it might be a sign to indicate what could be going wrong. I don't think it's really anything serious. He's been living fine, happy and relatively healthy these past 11 months. But if we know specifically what is going on, then we can know how to go about helping him gain weight (possibly through growth hormones) and fixing his heart. Regardless of the outcome, he's still my sweet little boy. For now, I'm just going to keep doing what I've been doing.

Success! Finally!

As anyone who has been keeping up with my blog would know, Dallin has had a little trouble gaining weight since he was about 4 months old. For whatever reason, he just hasn't been able to gain enough weight to keep up with his growth curve, or any growth curve for that matter. He has moments when he'll be doing well and then he'll drop off again. In every other respect, he seems like a perfectly healthy baby. He looks healthy (he's small, but he's not skin and bones, he's got fat on him), he's a very happy baby, he can stand up by himself while holding onto a chair, couch, toy, etc., and is working on crawling. I just haven't been able to get him to gain much weight. Even when I gave him some super calorie formula for 2 weeks on the pediatrician's recommendation, his weight did go up, but not really any substantial amount, just an average amount.

At the beginning of this month, he hit rock bottom. In one month, he did not gain any weight. Not a single ounce. I'm not exactly sure how that happened (I promise I was feeding him!). I knew that I needed to do something different to help him gain weight. I'm willing to give Dallin formula if that is what is necessary to keep him healthy, but I wanted to try every other possibility before going to that. So I started working with a breastfeeding specialist. She gave me some tips and I tried them for a week. Then I took him back to the specialist yesterday to be weighed again. I'm always nervous when I take Dallin to be weighed. We weighed him, and in one week he had gained 4 ounces. The specialist was expecting him to gain about 1-3 ounces. He finally gained more than expected instead of less!!! I'm so happy that something has finally worked. Seriously, this was like the 3rd best moment of Dallin's life; #1 being when he was born and #2 when the cardiologist told us his heart was fine.

I'm going to keep doing what I've been doing and hopefully it will continue to work and he'll keep growing well. I would love to be able to be past all these weight problems. I know it's only been a week and that we need to keep him gaining like this a lot longer than that, but we finally have a good start.

And I'm happy to report that he has gotten his first tooth!

Tooth #2 will follow shortly.

My tiny 0 percentile boy

Dallin had his 6 month check-up today. I was anxious to see what his weight would be. He seems like he's getting so big, so I was very hopeful his weight had made a good jump.

Weight: 12 lbs 13.5 oz

Height: 25 in

Head circumference: 41.6 cm

When the nurse weighed him and charted the measurement, she looked at it and said, "This can't be right. Let's weigh him again." In my head I was thinking, "No, it's right. He really is that small." Good thing we weighed him again. It added an extra 1/2 ounce!

Of course the doctor was concerned about this and spent most of the time talking about it. I don't think the concern is so much that he's small, but that he started out right along the 25% curve and has made drastic jumps off the curve entirely since then. We discussed ways to boost his calorie intake, including a few meals of solids foods daily in addition to his regular diet. So once again, I'm focusing on trying to make my little baby bigger. At least we probably won't have to worry about childhood obesity later in his life!

In every other area, Dallin is growing and progressing very well. He's always squirming and moving and trying to get away, he just can't make it very far yet. He wants to walk so badly, but he still needs a lot of work on his balance. He rolls all over the place and can somehow rotate his body around on the floor about 90 degrees. He eats his feet and anything he can get his hands on. He can sit up by himself for about 10-20 seconds (as seen in the picture at the top), but I still have to keep my hands ready nearby. He is working on falling asleep all by himself, and we have successful days and some hard days. He has a tooth just barely breaking the surface and another one very close behind it. And his huge smile continues to amaze people and win over the hearts of many cashiers at the grocery store.

4 month Check up

Dallin will officially be 4 months old in 2 more days. I can't believe he's growing up so fast! He's sitting up very well with support and he's almost ready to sit on his own, but not quite yet. Every once in a while he shows interest in rolling over, but for the most part is content to lay still. He has very big eyes and he's always looking around soaking up the world around him. He watches the little things we do (like eating, cooking, writing, folding laundry) and I can just see his brain working to figure out what we're doing and why we do it. He is very strong in his arms and legs. He has been able to support his weight with his legs since about 3 weeks old, but now he does it even better. If you hold onto his hands and give him a gentle pull up, he'll do the rest himself and pull up to a standing position. He's always smiling and talking. I'm constantly amazed at how much he is growing up and learning.

He had his 4 month check up yesterday. Here are the numbers:

Weight: 11 lbs 5.5 oz

Length: 23.5 in

Head circumference: 40 cm

We knew that Dallin would be weighing pretty low at this appointment. His cousin Lucas is 2 months younger and 2 lbs heavier. He's gained 1/2 a pound in the past 2 months. The doctor wasn't super worried about it though. Now that he's getting more active, it's typical for babies to be using more of their calories and storing less of them. It's just something we need to be aware of. Before I would generally let Dallin set his feeding schedule, but now I'm trying more to make sure he has more frequent feedings to try to give him more calories. Other than his weight, he amazed the doctor at how well he is progressing and developing. We have a pretty amazing little boy and I'm excited to see the ways he'll continue to amaze us.

Two months old!

Our little baby is two month old now. He had a two month check up on Monday (one day short of 9 weeks) and he is a healthy little baby.

New weight: 10 lbs 13 oz

New height: 21 1/4 in

Head circumference: 38 cm (in case you really wanted to know)

He's getting more control of his body. He can hold his head up fabulously, and he's even working on his stomach muscles too. If you have him sitting up on your lap and then start to lean him back, he will use his stomach muscles to try to stay sitting up. He can't quite do it on his own yet, but he's getting there. Here is a video of him learning to use his arms and legs. I'm not quite sure what he's trying to do, but I love it.