Day 4

Tony had day 4 for changing our Elf. We still haven't come up with a name for our new friend. But we're working on it! Here he was all day today at the top of our fake kitchen tree. Stay tuned tomorrow night for where he was watching from all day.

Day 2 & 3 of Elf

We went to Shriners hospital on Monday and it was really good news! We will be doing surgery sometime in February or March. And it will be a same day surgery! Wahoo! They took more x-rays and made sure that the separation could take place and all thats holding his fingers together is skin. All the bones, nerves and stuff are there in both fingers. After surgery he will have a cast for a couple weeks and then it should be healed! Doesn't sound to awful and makes me feel better that the Dr is so confidant in that it will be a simple fix. Anyways, this is a short post too mostly because it's late and I am sick so I need some sleep to get better. It's crazy how much harder it is being sick when you have a kid. I wanted so much to stay in my bed all day today and just watch movies and eat soup. But I had to tell myself "Hey, even though your sick, be thankful you have a precious little boy in the other room who needs you." and I didn't give it another thought. I just got up and did what I needed to do and you know what? It paid off. He actually let me sleep until 10 and then after I fed him and changed him and we played and cleaned up the house a bit he took a 3 hour nap! Which did allow me to do some online shopping and watch a movie! It was great! Anyways, Me and Tony have been taking turns with moving the Elf every other day. It's been fun for us too! So here is some pics of the last day or so...

Elf on the Shelf Day 2 &3

Day 2: Tony's turn

Hanging from the kitchen shelf

Day 3: Me

A visit at Temple Square! 

Day 4 is tomorrow so we will see where Tony moves him!

This was at Grandma S's house on Sunday. He was perfectly content in this baby stroller (for dolls!) He loved being pushed around in it! 

Getting his finger x-rayed at Shriners. He is so good with any x-ray, he just lays there so patient checking out his surroundings. Every nurse has complimented him on how good he is! So proud!

This was today. I was doing dishes and he usually cruises around the kitchen in his walker. Well today he got to my fake pathetic Christmas tree I put up in the kitchen. I just let him go because I didn't really care, until he started eating the glitter off of the ornaments. So mischievous. I just love this boy so much! He is such a joy.

Have I mentioned that he is almost walking? Yeah it's crazy! He is so close! Oh and his birthday is in like 19 days. I can't believe it's been almost a year. I have a post coming about that. It's just going to be semi emotional for me so I gotta find some me time to write it. And I'll brace you all for it now... You can expect a post soon about more of my birthing feelings. Some of you may moan at that and not want to read it and thats fine. But those of you who do, I appreciate you letting me write about them and taking the time to read them. It helps me get through. 

It's been a month!

So peeps. It's been a month since my last post! And this one is going to be short. I also know I need to change my background and title to a more Christmassy theme. I will get to it hopefully in the next few days. I don't have a lot to say (actually I do, but since I'm going to bed it will have to wait) but I wanted to post and say we're still alive! And doing great just busy! Tomorrow we go to Shriners to see the hand Dr. We will hopefully find out when surgery will take place.

So for tonight, enjoy this pic of our new little visitor for the month. We don't know his name yet but I'm sure we will within a few more days! I'm really excited about this new tradition starting in our home. Can't wait until my kids are old enough to get excited about it with me! (For those who don't know, he is the elf from The Elf on the Shelf book).

I feel like Rev Run

Anyone seen that MTV show? I used to love it! At the end if the episodes Rev Run sat in a hot bath and typed a sermon if that's what you call it, on his blackberry. So that's the reason for the title. I'm sitting in a bubble bath typing this post, sorry if that's TMI.

Since Maximus was born I have not attempted to look for groups or forums on his his condition. For two reasons:

1. The first time they told us they think he has Goltz syndrome we pretty much immediately turned to Google. Because that's what you do when you don't know about something right? You Google it. Well it was scary to say the least. I read all I could on Goltz Syndrome and honestly it scared me. It was a bad idea, it made me think the worst and that was not what I or my son needed. I did finally come to the conclusion that even if it was the worst, it didn't matter I love him and I'll do whatever it takes to make him comfortable and happy. Because that's my job and Heavenly Father trusts me with it and I don't wanna get fired.

2. I didn't want to see or hear the worst again. So I was afraid to find others with his syndrome for some reason it just scared me. Like I was going to find something out about Goltz that I couldn't handle.

Well people, I finally got curious or brave or whatever you call it and it turns out I had the complete opposite happen. Heavenly Father must have given me a raise because it was an answer to 10 months of prayers (everyone's, not just mine). I found a group on Facebook called Help find a cure for FDH (Focal Dermal Hypoplasia) aka Goltz Syndrome. It gave me so much hope, so many answers I began to cry of happiness. Their are almost 300 members who know of someone who has Goltz, has Goltz themselves or is a parent of a child who has Goltz. I have been able to talk to other moms and other older (females) who have Goltz (I feel like I'm using that word too much so sorry!). Most in the group are females. Only 3 I think are males. I am currently talking to a mom of a 16 yo boy who was diagnosed at birth. Maximus is pretty much following in his path. He has all the same abnormalities and everything! He plays baseball and has been like a normal kid most of his life. It feels so good to know this to have someone who's been through it and can give me answers. Also most of them have had feeding and eating issues. They are small but healthy so I now know Maximus doesn't and won't eat a lot and its ok. Anyways that's why it was an emotional day, but I got through it and I know it's not the last.

Today we took him in to his pediatrician and he weighs 13 lbs 10.5 oz! I'm hoping he will be 15 by his birthday. But that's a stretch and if he's not its ok! His throat looks good and his ears look awesome too. So we're on a good path! He's eating pretty good too. We give him finger foods that are small and he shovels like 3-4 in his mouth at the same time. And he doesn't gag or choke. It's awesome!

Anyways, next week on the 8th we go see Dr H. at Shriners for his foot. We will see what she has to say and when surgery might be. The hand Dr will be in December.

Well that's all I have time for right now. I need to get a post done about Hunting for 10 days. It was fun!

For now, I gotta go put my brave little boy to bed.

Night night.

Post Surgery

Maximus did pretty well getting his tonsils out. His recovery has been up and down. The biggest problem is that he is getting more teeth! I think 2 more, I can feel one for sure just not sure if there is another, so that will make 7-8 teeth! So he doesn't want to eat because his throat and his teeth hurt. I don't blame him, but it's soooooo frustrating at times. I don't want to end up back in the hospital with feeding tubes and IV's. So I'm praying he heels quickly in his throat so all we have to worry about are his teeth, which I think I can handle. Anyways, he has been quite the trooper. Once we got home he seemed to be doing better but the next day (yesterday) he seemed to be going up and down again. We spent almost 4 nights in the hospital. They let us go home Thursday at about 4pm. I was so excited to see my own bed. You have no idea!!! Well unless you've slept in those stupid pull out chairs that make into a 2 foot wide by 5 foot long bed. Plus we shared a room the last two nights with a week old baby who was really high maintenance and by that I mean the poor little guy was hooked up to everything you could imagine so Dr's and nurses were in literally like every 15 min. 

As for me and Tony, we are doing good. Just going day by day right now. Real Estate for Tony is picking up pretty good so thats exciting. I'm still selling Paparazzi Jewelry and it's pretty fun! I need more people to do parties though so if you would be interested please let me know! Christmas is coming and the jewelry is affordable and cute! At the end of this month sometime we will be going hunting. I am pretty excited to go, I always liked going with my dad when I was little and I've missed it. I had so much fun with Tony the first year we were married and went, we didn't get a deer that year so here's to hoping this year we do. It should be fun and maybe we will see some snow! It will be different going with a munchkin this time. Well he's up from his nap now so I better go get him! Until next post, enjoy these pictures and videos!

Playing in the waiting room waiting to be taken back to get ready!

Pre-Surgery

Post surgery. Not fun. He was screaming when I got to him. Poor guy.

A few minutes after I got to him

Getting wheeled to his room

This was his favorite! Going for a ride in the stroller. We did this multiple times a day. 

After a ride in the stroller

Sleeping on Grandma

Playing with mom

Chillin' in his hammock, he loves it!

At Target yesterday we found these and put them on him! He looks so dang cute! 

At home in his jumper one of his favorite things

Update

A little update! Maximus is doing great! His surgery on the 21st of September couldn't have gone better. I was so nervous but my little guy was a champ! The surgery was about an hour and a half and the results were what we wanted to hear. NO PULMONARY HYPERTENSION! His numbers are at a normal level! So we got the news at the first of this week that he doesn't need oxygen anymore! After almost 10 months we can get rid of it! I was so happy! Can you tell? Also while they were in there our cardiologist Dr H. wanted to close his ASD (the hole in his heart that never closed after birth). So they asked us what we wanted to do and told us of the risks and we decided to go ahead and do it. So they went in through the other leg to put a coil in his heart and close off the hole. It's crazy to me that they can go through an artery to do that now. No open heart surgery to close it off. Maximus recovered quickly. He acted like nothing happened and was back to his normal self within a few hours. It was so awesome and made me a happy mom! 

Maximus is 9 months now (almost 10!) and he loves to sit and play, is almost pulling himself up to things. Loves to babble and talk and laugh! He knows how to throw his toys and balls. He likes to eat cheese and chicken and stars soup. He may only have to wear his helmet another 2-4 weeks. He also loves music! anytime we have music or toys with music he just loves it. 

Tomorrow we go back to Primary Children's for his tonsil surgery. I was hoping his tonsils would go back to normal but they actually got bigger. So it will be better to get them out. I can't believe it's already here. I am not as nervous about him going under now. But I am nervous about his recovery this time. I hope he will eat soon and be back to his happy self as soon as possible too. I know it will be a rough week and I am prepared as best as I can be. I just hope he is like he has been with everything else, like, "Is this all you got guys?". He is so tough but so little. I will keep everyone updated on Facebook tomorrow and throughout the week. Keep the prayers and thoughts coming! And know that we appreciate each and everyone of you who are there to support and love us. Here are a few pics of the last few weeks. 

Eating a sucker

Laying with Daddy

Matching Ties

Eating Ice Cream with Daddy

Playing with stuffed friends, he loves these guys

Love you all!