When it Rains....

So I spent all day on Friday setting up a fish tank. Cleaning an old one, getting new rocks because the old one had like 1000 snails in it and I didn't know it until I had the whole tank set up. Had my mom come over and help me get it set up. And then decided to wait to put the fish in it until today (Saturday). 

Ha ha ha funny crazy morning we had! 

2:30am - I went down on the couch because Tony was sawing logs so loud I could not sleep, this has not happened in months by the way.

5:30am - I hear this loud crack or bang and wake up thinking someone is breaking into our house. I turn my flashlight on my phone and take a look around without getting off the couch because let's be honest I was a little afraid. But finally braced myself and got up to go see if I could find the source that woke me up. Nothing was out of the ordinary so I went back to the couch and just sat there. A few min passed, and I start to hear the pump on the fish tank get louder and louder. So I again grab my phone turn on the flashlight and point it at the fish tank (as if something was going to jump out at me, I should have just got up and turned the light on but I was still a little on edge!) well turns out the loud crack was my fish tank! The whole bottom cracked and water pouring out onto my floor and my cedar chest which I sat it on. So I ran upstairs to get Tony out of bed to help me. We got it cleaned up and tried to go back to sleep. I stayed on the couch because I was too tired to move my crap back upstairs. Plus I was mad because I was so excited about the fish tank. Lol lame I know. I think it's because the kids were excited so I got excited. 

The cracked tank! 😔

Ok....

8:15am - Tony comes rushing downstairs and out the garage waking me up, I was kinda confused until he ran in and yelled the basement is flooding!! Oh my gosh! What? I got up, ran down there and my craft room is flooded and water is still pouring in from the window well which is full of water. It was crazy. So we spent and hour cleaning that up while our kids had just woke up and was screaming at the top of the stairs at our gate we keep up so they can't get to the part we're remodeling. 

So that was our crazy morning. But the day turned out pretty good! I went to my moms super Saturday she planned and helped teach how to make duck tape purses and some other cute crafts! It was a lot of fun and much needed. Then came home and luckily my mother in law kept Tony's old tank from having scorpions and it is the same size I needed for my fish! So I'm attempting it again. This time I spent an hour cleaning it and getting it set up in the garage until I know for sure no leaks or cracks and it's not gonna break on me. So wish me luck! Here it is set up in my garage. Just water water and my rocks for now! If I ever get it set up sometime next week I will post about it! 

Life with 2!

It's been crazy busy with 2. I love it, but it's definitely an adjustment. There are so many projects I want to do, get done. And I beat myself up at times because I'm not one of those super moms that has a perfect home, beautiful projects done everyday, a gourmet dinner on the table most nights. But I have to just back up and say at least my kids and husband are fed, and taken care of! Thats an accomplishment and if I happen to get a project half done as well then I pat myself on the back and feel good! We've just been hanging out mostly as a family of four. Tony takes Maximus on bike rides and hangs out with him a lot. He's been great at getting him fed in the mornings while I'm feeding the baby. It's so nice having him work at home and at the same time frustrating for him because I'm trying to clean and chase a toddler around keeping him out of Tony's office and try to keep him from pouncing on his little brother!

Tony is still doing Real Estate, loving it! It's getting better slowly and he is learning a lot. If you know of anyone wanting to buy or sale or if you yourself are thinking about it give him a shout! He's great at what he does.

Maximus is doing quite well. He just saw the eye Dr again a couple weeks ago and gets to have glasses! I was really worried about this he already has so much going on. But I know he will do great with them when he can see the benefit from wearing them. We haven't got them yet, I'm hoping to cross that off my list this week. He's also starting to figure out a few words, and he's still using his sign language quite well. I can't believe he will be 2 in December! It's gone by so fast. Some stats and likes for Maximus are:

Weight: 17 lbs 4 oz

Height: 30 in

(still not on the charts but growing on his own curve!)

He loves to tease, he loves going on bike rides with dad, has to have his grandmas right next to him while he is at their houses (or mom or dad at our house), hates nursery!, is very curious and an explorer. Maximus also still has 4 therapists coming to our home to work with him. OT - Gary works on fine motor skills and keeping him on track, Speech - Gayleen works on feeding issues and obviously speech, and then two other ladies Becca and Alex come out to help me and Tony with his tantrums and frustrations I'm not really sure what their title is. He does not receive any PT at the time because he is his own best physical therapist. He wears a foot brace and it helps a ton, in fact he will not wear a shoe anymore unless he has his brace! It's so cute. I need to get a picture of it. His Dr visits have slowed down tremendously. He only goes to a couple Dr's a month now and I suspect after the first of the year that will drop even more. It's nice for us as parents and for him I'm sure. Maximus also LOVES to help me clean! SCORE! He LOVES the vacuum its his favorite. I need to find him one for Christmas that is a toy but still does the job. He gets so excited to help me vacuum. I have a video of him helping me I'll try to upload but right now it won't work. Well thats about it for now. Here are a few pictures to enjoy...

We bleed BLUE now dad... Not red. Yes you were right it was only a matter of time. 

Makaius loves to snuggle mommy

Had a little jaundice so he's sun bathing

loves to snuggle with grandpa's

Just like older brother and LOVES his baths

Maximus in the new bike trailer going with daddy

went hunting sheep with daddy and grandpa

So much to take in!

Our conference so far has been pretty awesome! Our flight wasn't too bad and Maximus did really good. Baby #2 coming in September was doing summersaults the entire two flights! It was crazy. Here is Maximus on the first flight. He was so tired but smiley when we took off but then it was so cramped the rest of the first flight he was onery. The second flight he slept most of. 

Here is daddy and Maximus at the pool. He loves it! 

This is a picture of all of us who attended a meeting this morning with a few of the Dr's, including Dr Goltz! These are mostly the parents and those who have Goltz that are old enough to attend. It was very informative and interesting. They talked about genetics and stem cell research. 

This is Dr Goltz 

Then we had a pizza party tonight with all the families! It was so awesome and so fun to meet and talk with all the other parents and other Goltz people. Here is a picture of most of the group. I'm so thankful to the NFED and all these people. It's amazing to me how sweet and kind they are. They all love Maximus and were so good to him! I can't wait to get to know them better the rest of the week. 

Tomorrow is a early and busy day full of evaluations and Dr's. They will do physical evaluations, blood work and if Maximus will cooperate we will do a skin biopsy for them. Then they are taking us to an aquarium and dinner tomorrow night. We are pretty excited to go there and have some fun. 

Going to get to bed now since we have an early day tomorrow! Wish us luck! 

July so far...

Hi family and friends!

July has been good to us so far! Here's what we've been up to!

Technically our 1st yard sale fundraiser was at the end of June, but it turned out pretty good! We had a generous turn out and we are hoping to have another good one on July 13th. If anyone has anything to donate to it we welcome it! Let us know as soon as possible so we can get things ready next week. HUGE thank you to one of my best friends and her husband and in-laws! They helped out a ton by making headbands and bows and home made suckers. Also a huge thank you to ALL those who donated items/money. And another HUGE thank you to my in-laws for being there helping the whole time with Maximus and our yard and clean up. I'm truly blessed to have such great in-laws, I couldn't ask for better ones and I hope they know how much they are appreciated! Here are a few photo's I took about half way through the yard sale. 

Maximus also turned 18 months on June 22! Holy cow! Where does time go? He is getting so big. I can't believe it. He is walking pretty much everywhere now, still with a limp but we are working on it. I am so proud of him and I can't believe how far he has come. I still need to get some video of him walking and playing in his pool. We put him in nursery for the first time last Sunday. He did pretty good until we checked on him and then I had to stay with him the last 45 min. Here are some pics I took.

We also took him in to get his brace for his foot. We are still waiting on it to be made. The Dr has to do it himself because Maximus's foot is so unique. Usually they just use a pretty generic one and shape it to each persons foot, but in Maximus's case that wont work so the Dr just said he is going to take time to make one specially for him! Awesome huh? We really like the Hanger Institute! It's the same place we got his helmet done at. 

Here's a video of them cutting the casting off after molding it to his foot. He was laughing the whole time! 

Our 4th of July was pretty low key. We just hung out at home all day and then went to Tony's parents for the evening for good food, fireworks and games! I was horrible at getting pictures. Oh well! 

Last but not least last night we were sick of sitting at home with NO AC! So we went for a drive for a few hours. We stopped and got Ice Cream and I snapped a couple of cute pics of my cute little gangsta!

We are so thankful to all those that have and are helping us to get to the research conference. I'm counting down the days now! 14! I cannot wait! We were finally able to buy our plane tickets. We also decided to take both grandma's with us to the conference as well and I am so glad and lucky to have them both come and help out with Maximus. We are still raising money for a few more medical bills and for other expenses for the trip, so if your interested in helping you still can and we appreciate it. 

Been a Little MIA...

So... 

It's been a while friends! I was ill with baby BOY #2 for 22 weeks. Literally, I did not do anything but lay on the couch and in my bed and sit by the toilet about 60% of the time. This pregnancy has been worse as far as being sick. I did not throw up near as much with Maximus. But I'm almost 27 weeks now and I'm doing much better. Just stressed and have a little bit of pain in my back and pelvis and ribs. Our ultra sound with this baby went really well and we are hopeful that he will be a strong healthy boy. Not that Maximus isn't strong and healthy because he is, but just more medically challenged. 

Tony is still working hard at the Real Estate thing and it's going really good for the most part! He is really learning a lot and enjoying it. He hopes to continue building up his clientele and making it work! 

I wanted to let everyone know that we are going to attend a Goltz research conference in just over a month! We weren't sure if we we're going to be able to make it but it's kind of a once in a lifetime opportunity as far as we know. It's the first one ever and may be the last. So we had to sign Maximus up. It's going to be in Houston, Texas from the 22-27 of July. We will be able to meet about 15 other people affected by Goltz alone and 100+ affected by just the skin condition called Ectodermal Dysplasia. It is through this National Organization that I came across through a facebook group I found on Goltz Syndrome. We are really excited for this and it's going to mean so much to our family to see others affected and meet them and their families. I think I cried for a couple hours when I found all this! LOL. I just feel like it will help us and Maximus so much. So, one of the reasons I blog about this is because we are on a very tight budget and still have quite a few medical bills we are trying to pay off. We have given it much thought and prayer and have decided to set up an account for donations to help pay for this conference. If anyone of you would like to donate to Maximus's Goltz Research it would mean so much to our family and help us out more than you can imagine! We have set up the account through Mountain America Credit Union. To donate you can do it a few different ways:

1. Walk into any Mountain America Branch and tell them you'd like to donate to Maximus's Goltz Research fund.

or

2. Call or send money to any Mountain America Branch and use this account #9634386. 

Also I've added this to the side --> of my blog in case you forget or don't want to search for this post!

Thank you in advance to anyone that donates. We hope to give back in some way as soon as we can! And now that I'm feeling better I hope to keep this updated more often! I can now do it straight from my phone and I've figured it out a little better so I hope to blog a couple times a week. 

Maximus the last couple months... Where do I start? He has had a lot going on since my last post so bear with me on this one! It might be looooooong!

Last post was pre surgery for separating his fingers. I never posted about after. So here are a few pics.

Pre-Surgery just waiting

Sometime after (a few weeks maybe?) snoozing on Grandpa

We had to take an expensive trip to the ER up at Primary's because I was an idiot and gave him a bath wrapping his arm in a gallon sized bag and taping it up thinking it would work, well it didn't and soaked his cast. Which is not supposed to get a drop of water on. So this is a picture of the cast off about 5 days after surgery. 

The picture of me and him is part of the white plaster cast, the first one. The red cast is the one he got at the ER visit, the second cast. 

Taking a bath holding his arm out of the water, this cast was much better because it didn't matter as much if it got a little wet. 

All in all the surgery and recovery went well. He wore the cast for a month and the adjustment to two fingers has been good. Still very sensitive to touch especially between the fingers since he has never experienced touch between them. He still keeps them pretty close together, but slowly working on using them separately. 

This is a video of him crawling with the cast. If you've ever seen the movie Mighty Joe Young he crawls just like the gorilla on that movie! It was so cute!

Some other favorite photos

This is how we announced to our families of baby # 2 at 10 weeks. 

Just Maximus and Mom one early morning going to a Dr appointment

Cute little smily boy

Getting into mischief 

LOVES playing in the dirt!

Maximus went under again in April for another two procedures. We found out he has no enamel on his teeth, and it was causing infection so he had to get them wrapped with a protective sealant. They just pull back his gums a little and wrap each tooth with I think just a cap type thing. He also had his tear ducts probed the same day. Both Dr's were amazing and willing to work together! It was so nice! We have recently last week found out he may be losing vision in his left eye. So on the 19th we go up to the U of U to another specialist to see another eye Dr for a second opinion to see if he will either need to wear a patch on his right eye for a period of time to see if it will strengthen his left vision or if he will yet again need another surgery... 

Also LOVES the water! 

Maximus is also almost walking everywhere! He has a bit of a limp and we think he is delayed because of that so we are going to see another physical therapist to see if they can figure out exactly whats causing it. Hopefully nothing too serious and he will still be able to continue walking. 

Here are some other video's if you want to take time to watch any of them!

Playing with Daddy

crawling like Mighty Joe Young

walking outside with walking toy

Hope this wasn't too long or boring!