Sunday, June 28, 2009

What to do?

Bob and I have been thinking about Ezra's head shape a bit lately. We can't decide whether or not to have him get a helmet. Every time we go to the doctor his head is mentioned. I personally don't care that his head is funky, but I don't want him to hate it his whole life. I felt strongly that Ezra should not get the helmet when the doctor first recommended it; maybe that was the right answer for then but not now. Bob thinks it would be best to get it, but doesn't want him to have to wear a helmet. Major pros: Ezra's head will be more normally shaped, we won't have to feel guilty when we see the plastic surgeon because we haven't done it. Major cons: He has to wear it 23 hours a day for around 3 months, a lot more doctors appointments. I am having the doctor write us another prescription and Bob is going to have them look into whether or not our insurance will cover it. We still don't know what to do though, and while it is not up to any of you we are are interested in what you all think. Please vote in our poll or leave a comment or both. We love to hear from you!

Wednesday, June 24, 2009


Well, I won't let a silly lip get in the way of my ambissions! I still have a nice big opening in the roof of my mouth so there is still room for plenty of things! I've upgraded from the simultaneous pacifier and bottle to doubling up a sippy cup and a bottle.

This is the life.

Saturday, June 20, 2009

Computer skills

Hey everybody, this is Ezra. I just wanted to give you all a shout out and tell you that I've been keeping up with your blogs and show off my mad computing skills. I'm doing really well, and my dad is really, really great.

Wednesday, June 17, 2009

Two little chompers!

Ezra now officially has two teeth. His second lower central incisor poked through this afternoon. His first tooth made its way out last Thursday with seemingly no problems. It seems however, that since then he has been a bit more fussy. He is most fussy when we try to give him his bottle. He would eagerly take it and then start screaming. Needless to say the last few days he has been having a lot more cereal and vegetables (which makes for some pretty interesting colors coming out the other end).

He seemed a lot better yesterday, but woke up a couple times last night. At 4 am he woke up screaming and wouldn't calm down. We brought him into our bed and stuck a bottle in his mouth, luckily he took it and fell back asleep. He was cranky this morning, but when he woke up from his nap he had another tooth! He has been a happy camper ever since. We tried to get some pictures of the teeth, but they are both still too little. You can see the older one pretty well, but it doesn't really show up in the pictures. They ought to be at the super cute stage by the time we make it out west to see the fam! If you click on the picture below they might be big enough for you to see if you look closely.

P.S. Ezra officially rolled over all by himself from back to front, both ways, today as well. Still not much luck with bringing the front to back back to life, but take that Early Intervention!

Monday, June 8, 2009

Ezra Bowling: a case study

I feel that I should begin by thanking everyone for their love and support. We've felt it and it has helped a lot. Ezra is quite a joy even with the extra stress that he brings that other kids might not. As an update we thought we would let you know how things went at Ezra's appointment today.

In the last the last week Ezra was diagnosed with a heart murmur, plagiocephaly, brachycephaly, and torticollis, and the doctors were worried about him not rolling or sitting up and constriction of his anterior fontanelle, much of which has been covered in a previous post. Before you begin worrying, please remember the previous post (or go read it) and let me explain. Today was actually quite relieving. Ezra has had his heart heavily monitored. He does not have a heart murmur. The plagiocephaly and brachycephaly is a fancy way of saying his head is funny shaped from sleeping on his back, often with his head to one side.

Ezra looking good in a his backwards kimono

Today's we saw a neurologist (another one to add to Ezra's list) and his new diagnosis was torticollis. The doctor said this because he slightly prefers turning his head towards the right. Basically his neck muscle on one side is a little stronger. He showed us some exercises to do to help him even out. The good news is that he did not order an MRI. He was not concerned about the size of his soft spot (fontanelle) and he felt that his development and reflexes were mostly on track. He agreed that we should do the early intervention physical therapy to help with rolling over and sitting up and also that the PT would help with torticollis. He did, however, recommend that we should get Ezra the helmet he was previously prescribed, but we're sticking with our pediatrician and feel that he has gone through enough. I hope it doesn't make us bad parents that we don't care that his head will be a little flat. The neurologist also ordered a neck X ray to see if there were any bone abnormalities causing torticollis, but we already heard from our pediatrician that everything looked normal. Hooray for Ezra!!!

Friday, June 5, 2009

I'm 1/2 years old!

Ezra turned 6 months old yesterday! The time has flown and Ezra has accomplished so much! He has survived 2 surgeries, countless doctors visits, and racked up somewhere in the ballpark of 50 grand in bills (thank you insurance)!

He has enjoyed visits from family, seen a lot of the sights, and endured some freezing cold weather. He has gained 7 pounds and grown 7 inches. He has a smile that melts his Mom's heart, and a laugh that always keeps his Daddy coming back for more. He really likes to exercise, especially kicking his feet. He loves songs such as "The Itsy Bitsy Spider" (he gets to be the spout) and "Head, Shoulders, Knees and Toes" because they have actions.

He also for some reason loves "The Chapel Doors Seem to Say to Me". Every time I do the Shhh! Be still! part he gets a huge grin on his face. He holds his own bottle, loves to eat cereal and is diving into the world of veggies quite well.

He loves toys, especially ones with tags or that make noise/music. He sleeps through the night, takes long naps and is always a happy camper. He lost all of his hair, and grew most of it back.

He loves to eat his fingers and suck on his toes.

He often talks to himself and us (especially while eating), and even gives an occasional scream. We have loved every minute with him and look forward to the next six months!

Latham Pics...finally

Well I finally got Ezra's Latham device pictures from the Dental team. We got to keep the Latham device (at Bob's request). Hope you enjoy!


1 week

3 weeks (it's already done moving)

5 weeks

You can see the spikes that they hammered into his palate bent over!

Reality Check (this will be long)

As many of you know (because I kept bragging about it) Ezra had no appointments of any kind in May! It was a wonderful month and a great break. However just three days into June reality came back with a vengeance, how dare we leave it for a month. Ezra had his follow up appointment with the Geneticist on Wednesday morning. They said that all of his blood work came back normal and that they saw no problems with his chromosomes. Then the Geneticist did an examination and came to the conclusions that Ezra had a heart murmur, that his head had dropped from the 75th percentile to the 30th, and that he had low muscle tone. Because Ezra was headed to his six month check up with his pediatrician next they said they wanted him to have a follow up with cardiology if the pediatrician also heard the murmur and that he would need some kind of head scan because of the drop in size and his soft spot is a bit small. I kind of thought that he was a little crazy because Ezra has had is heart thoroughly checked multiple times in utero and since he was born (thanks to the clefting). He had an EKG the day after he was born and has been on a heart monitor every time he has had surgery, not to mention his well baby appointments. No one has seemed to think there was a problem. Also this is the second time he had said that Ezra had low muscle tone, and no other person checking him out for all the million times he has gone to the doctor has ever said this. He is incredibly strong and very active, in my opinion definitely not low muscle tone. Anyways, he said that he would call the pediatrician and report everything to her.

A little spikey hair thanks to the ultrasound gel.

So we leave and head straight to see Dr. Potee. They brought us in a room and did Ezra's vitals. They said he was 27 inches long and that he was just under 13 pounds! WHAAAAT! You mean to tell me he fattened up a little, grew a couple inches and has NO weight gain to show for it. Crazy I know. When Dr. Potee came in I told her what the Geneticist said. She did not hear a murmur and was not concerned. She agreed with me that he has been thoroughly looked after over the last 6 months. She had noticed that his soft spot was a little tight last time and agreed that he would need some kind of head scan (she did not think that his head had dropped any percentiles). They were a little concerned because Ezra is not really rolling over anymore (if you remember he started just before he was two months old which is extremely early), and not as close to sitting unassisted as they would like, so they want to make sure that with the small fontanel that his brain has plenty of room to grow. When I asked her about the weight gain she insisted on weighing him herself because she just couldn't believe that he had lost .24 kilos. It turns out they had written down the wrong number. He really weighs 15 lbs. Whew! She ordered an ultrasound of his head and an appointment with a neurologist. She also got us hooked up with a program that will come and assess him to see if he needs a little physical therapy to help him with rolling over and sitting. She agreed that he did not have low muscle tone and left to go call the geneticist (he paged her while she was in with us). They had words, but kept it nice, according to Dr. Potee, and concluded that his heart was fine, but to go through with the head scan. So Ezra got his shots and we headed upstairs for an ultrasound.

I've been so busy with my feet, I forgot about my hands!

The lady in ultrasound was really nice. Ezra was really good for her and was such a little trooper. When she was done the Radiologist came in and said that there were some things that they saw that are not uncommon, but not "normal" and that she saw no reason for concern, however she admitted that she could not say what the doctors would take away from it. They couldn't get as good of pictures as they would like because his fontanel was so small. Anyways...Dr. Potee called us that night and said that you couldn't tell much from the ultrasound and that she was pretty sure the neurologist would order an MRI just to make sure that everything is okay. So it looks like Ezra will be sedated again next week for an MRI. Wahoo.

We got Ezra a bumbo chair to help him learn to sit up!

Bob and I are not too worried (I was a little freaked out and worried that night because I felt so confused trying to explain everything to Bob). All of Ezra's development is on track (babies normally sit up somewhere in the 6-8 month range) so we are just taking this as a precaution (which is what Dr. Potee told us to take it as). So much for having less doctors to see though. Oh well what can you do! We will keep you all informed as to the findings.

Monday, June 1, 2009

Good News Moment

My what blue eyes you have!
Note the matching double chins!

We have had a few little things happen to make us all a little happier these days. I'll start with mine because I'm sure it will be the least exciting to you all. For those of you who don't know I have very unruly hair. I can't let it air dry because I end with a huge ugly wavy fro, if I blow dry it is is also huge, but a little more straight. I have to whip out the flat iron and go to town for an additional 45 minutes or so to make it look presentable. This is why most of you see me with my hair in a ponytail or braid or some other easy solution. I have always envied those who could just jump out of the shower and go. Well I covet no longer. A couple weeks ago I bought some mousse, and when I got out of the shower I put a ton of it in my hair. I then brushed my hair and let it go. I did no scrunching or anything....and it worked out great. I won't say that it was the most beautiful do in the world, but I didn't have to do much. I think it needed a little more product but it worked. I got no comments that day, but I have not been so happy with my hair in a while. I think it is as natural as I will ever get.

Oh and one other great thing for me....I get to be done pumping this week. Six months was a long time and I'm really glad that I did it, but I am so glad that it is coming to an end. Bob is excited to get the freezer space back. ( I have around 45 bags of frozen milk in the freezer...I'm basically a milk cow)

Ezra is a little happier these days because he has found his feet. He loves them, and it makes it a little more difficult to change his diapers while he is chewing on them. He is a lot happier in general though. He sleeps from 7:30 til about 6 or 7 and when he wakes up he talks to himself for like half an hour. It is really nice. He also takes much better naps, usually around 2 hours. He loves to eat his cereal and has rice for breakfast and oatmeal for dinner. We are excited to start him on some veggies soon. He is such a happy boy! Sorry this video is so dark!

Bob has the most reason to celebrate. A few months ago we could not find Bob's mission scriptures anywhere. We searched our house, the car and the church and decided that they must have been left in the trunk of the rental car from Ezra's blessing along with 2 big bags of clothes someone had given us. It was a big bummer to lose his mission scriptures. This Sunday Ezra was being a little fussy so Bob took him out and decided to check the lost and found again just to kill time. Tada...there were his mission scriptures. He was so excited about it that he came back into Sacrament meeting even though Ezra was not being the quietest baby (he loves to talk/scream).