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! 

Maximus's Surgery

Max is going in tomorrow morning at 6 am for his cath procedure. Yes I am still awake. I'm a mom and I'm worried and scared. I will try my hardest to keep updating throughout the day tomorrow on what's going on through here and Facebook for those of you that want them. Thank you to those of you praying for Maximus and us. We truly appreciate each and everyone of you. Tony gave both me and Maximus beautiful blessings tonight to help with the day tomorrow. I love him so much for having the priesthood and being able to use it. I hope we get some clearer answers to this pulmonary hypertension and that it will be fixable! Maximus has been a champion through everything he's been through and I don't doubt him being a champ tomorrow! I love him so much! He's my hero!

A Late Night Post

Hello everyone (whoever actually reads this blog). Just have a lot in my mind do I thought I'd write a post. Not that anyone will care to read about all that's on my mind but maybe if I get it out there I can find some motivation to remove some of the stress that's crowding my brain!

1. Exercise. I seriously need like a personal trainer that doesn't cost money. Any volunteers? I am so sick of being fat. But I'm so un motivated it's not even funny. And brownies and ice cream that I just ate at 11pm doesn't help at all I know. I've been keeping the weight I've lost off but I'm not losing any more. And I've got 40 lbs to go. My husband tries to help me bless his heart, tries to motivate me but it's hard even with his helpful words of encouragement. So I'm depressed about it. I want to be skinny again! I guess I just have to want it bad enough. Any advice?

2. My 8.5 month old is going to be having 2 surgeries in less than a month and I'm extremely emotional about it. I've cried a number of times just thinking about it but I do it when no one can see me because I'm trying to be brave. But seriously I'm so afraid for him. I'm afraid of complications, I'm afraid of the unknown. I'm afraid of what the Drs. will say or find. I get the papers in the mail explaining protocol for the day of surgery and I cry because it sounds like so much for a little guy. I wish I could do it for him. I wish I could be more brave. I feel like such a baby sometimes like I'm making a bigger deal of it than it is and maybe I am but I'm his mom and I just hate knowing what pain he will be in.

3. Finances. I'm not going to go into it because it's too personal. And really were doing pretty dang good considering! But there's a lot to think about. We've been so blessed with help in this department and are forever grateful for those who've helped and continue to help! I cant express the gratitude we have for the money and other things we've received. And in no way is this a cry for help because we are doing great but finances are always heavily on both our minds.

4. The 500 million (ok that might be an exaggeration just a little) things/projects I want to do that I can't do because I feel like I have no time or money to do them! Anybody else have this problem? Lol. Just a few of the things I want done are: my kitchen table that's been sitting in the garage waiting for me to finish along with the chairs, my craft room, crafts galore! That need to be finished, I want to decorate my bathroom and finish with my bedroom, re paint my front room, paint and finish decorating my laundry room, re organize my storage room, find knobs for my doors! (none of my doors in my house have knobs, mostly because it's just the two of us and we want to finish the basement first). My list is at least another page long but I won't bore you any further.

Anyways I don't know why I felt like I needed to get all that out. But maybe it will make me feel better. I also don't mean to make it sound like I'm depressed or need help at all cuz I'm not! I actually am pretty happy just wish I was one of those super moms who have four kids and seem to be interior designers, professional cooks, and organizers ect. But I'm not and I don't plan to be just want to figure out how to keep motivated and do things that I want or need to get done on top of taking care of my husbands needs and Maximus.

So to finish how do y'all do it? Keep motivated? Get things done? I want to hear your ideas! Please!

What we've been up to!

Oh boy, remember how I said I would be better at blog posts? I lied. Forgive me for the long post. PS my pictures are in random order because I don't want to take the time to rearrange them. Maximus is sleeping and if he wakes up before this is finished this post is history! Anyways, real quick update...

1. Maximus got his helmet as you can see in some of the photo's. It's been a difficult situation. We know it's working, however because he has such sensitive skin it's been causing sores and bumps to form. So today I took him in (for like the 10th time since we got the helmet a month ago) and we got a rescan for a new helmet with softer interior for his sensitive little head! He looks so dang cute in it! We will get the NEW helmet in a week and start over.... Ugh. Oh well at least we know its shaping his head. When we told the Dr he had sensitive skin he said "No worries, I've dealt with sensitive skin before!" When I went back for the rescan he said, "I really have dealt with sensitive skin before, but this is definitely a first!" 

2. Maximus is 8 months old already. WOW! Time has flown. I cannot believe it. He now sits up on his own, rolls over from tummy to back, only takes one bottle a day in the morning and the rest of his meals consist of green smoothies and fruit and veggies packed with butter! He is starting to get a little more brave when he is sitting he wants to get things out of his reach but can't figure out how to move to do it. I'm sure it won't be long! He is saying Mama a lot now even though he doesn't know what it means. I'm on to teaching him Dada! He still loves his baths and it's even more fun now that he can sit up and play. He is a little explorer! Loves new environments, new people, and new toys. He is still on oxygen at night. Has to cuddle with something to go to sleep. And is finally reaching out at least to me when he wants to be picked up! 

3. On the 21st of this month Maximus will be having a procedure done up at primary's where they go through the carotid artery in his leg up to his heart to measure the pressures it's sending to his lungs and to see about finding a cause for his Pulmonary Hypertension, while they are in there they will administer a few different medications to see which would be best to put him on for the hypertension. I am really really really really really nervous about this. But maybe it's because I'm his mom? They will be putting him under for this and the surgery is 3-4 hours long. It is same day surgery (if there are no complications) so that makes me feel better! But I am just so worried. I just hate the fact that he has to have it done and that he has to be put under. I also don't like that they will be in his heart and a main artery. I will have Tony and someone else give him a blessing and I'll probably get one too. 

4. I am going to be leaving my little munchkin for the first time to go to Vegas with two friends for a Paparazzi Jewelry convention. I'm a little nervous about leaving him but I know he will be with his Daddy and Grandma's and be in good hands. But I'm leaving 2 days after his surgery! I'm hoping he will be recovered by then! 

Anyway's thats a brief update for now. Here are some recent pictures!

Sleeping in his helmet holding his binki

Maximus & Marshall hanging out on Ruka the dog

This is the bump and sore that forms from his helmet

I was feeling very ambitious today and spent 2 hours making and stocking up on baby food!

Sleeping with monkey

Hanging with Daddy

We sat down for dinner one night and heard this weird sound! After searching for the sound we discovered it was a bird stuck in our fireplace! You can barely see it!

My cute boy!

Sleeping holding his toes!

I was at the Dr one day and he decided to have a blowout! And stupid me forgot to restock the diaper bag with diapers. So I made one out of his changing pad I had in there! 

The Demolition Derby!

Sucking on his binki weird!

A video of him rolling over!

Motherhood Mishap and More!

Hello friends! It's been too long. A lot has happened since July 7 (my last post date) So bare with me on this LOOOOOOOONG post! Where to start? Yesterday I suppose...

Found this saying on Pinterest last night, and all though I only have one child who's only 7 months I can attest to you that it's true (and I look forward to have more little distractions)!

We got home from a long weekend trip on Tuesday, two family reunions in one. And I desperately needed to unpack and get my house cleaned and laundry done. I was going crazy Tuesday night with the mess but I was too tired and sunburnt to do anything so instead I took a bath and went to bed! So yesterday the unpacking and cleaning began. It was one of those days where my previous job as a police secretary was missed! Anyways by 1pm I was sweating and was about half way done and I finally got junior down for a nap so I decided it was lunch time and sat down to eat and watch a show for a half hour. I got my lunch fixed and junior decided a half hour nap was good enough. The rest of the afternoon he was whiney, wanted to be held, and would NOT take another nap. I did however manage to get my cleaning and unpacking done by about 4:45pm. But spent about an hour tearing my vaccume apart because it (no fault on me) decided to eat my sons butterfly toy that he loves. Don't worry, I saved the butterflies! Just minor cuts and bruises! And luckily my son is not old enough to be upset by it yet! One of many motherhood mishaps I'm sure.

Anyways, because Maximus refused a nap, this is what we encountered at about 8pm last night. (I should not be posting this video because I look my worst and don't mind the double chin I've got going on, it's hard to get rid of) I was laughing so hard I was crying! He was so cute, and sooooooo tired. I had to put it into 3 videos because it was too long.

What else. Let see, we spent a weekend in Lava, ID at Tony's uncles house. We enjoyed tubing down the river, a car show, and seriously the best parade we've ever been to! The kids had more candy than you could get trick or treating on Halloween and it went down main street and turned around and came back! It was awesome. I highly recommend this parade at least once in your lifetime. (photos and video will have to come in another post)

The next weekend (this past weekend) we went to Tony's family reunion up mayfield canyon at 12 mile campground. We enjoyed good food, fourwheeling, lots of rain on Friday, and family time! Maximus was a real trooper having to be on oxygen the entire time because the elevation is at 10,000 feet. He was such a good little camper. (again photos and video in another post)

Then on Saturday we left there after breakfast and headed to Bear Lake for my family reunion. We had a blast! We swam at the pool several times, played games, and then Monday my parents rented a water trampoline and a jet ski and we played for 8 hours on that thing! It was so much fun with everyone there. The little kiddos didn't care for the trampoline too much and my mom doesn't like water so even though we felt bad leaving her with the four grandkids, she insisted and made us adults go play. It was nice! Thanks mom! She did get a good ride on the jet ski with my dad though. We also went into town to get the famous raspberry shakes. They were pretty delicious even Maximus loved it! (photos and video in another post also, waiting on the hubs to edit them first)

I never updated about Maximus sleep study that was done up at Primary's. I don't have the results yet but the poor little guy endured a lot! But pretty much thought it was the funniest thing ever until he had to go to bed. I have a ton of pictures so I'll try and pick just a few to share. And as soon as we have the results I'll let you know what's next.

Having a bath in the sink at the hospital, he loved it!

Eating the cords, another favorite thing to do

Getting hooked up

Tons of monitors

Ninja hat

Superman belt

Trying to get it off my head!

Caterpillar wrapped

Night night!

We went to the Hanger Institute today for his 2nd helmet evaluation. We are pretty sure we are going to go ahead and put it on him. He will only have to wear it for 10 weeks. I just feel like if we have to shave his head because his hair won't grow in then I want his head shape to be good. We will get the helmet next week.

Last but not least, Maximus is 7 months old now! I can't believe it. Time flies now days. He is getting 2 more teeth which will make 3 total, 2 on bottom and 1 on top! We just found the 1 on top and the 2nd on bottom this weekend. He is sitting up by himself now and is almost saying mama! He has only rolled over by himself once from belly to back, but I'm not sure he will ever really care for it. He still doesn't eat well, but I don't know if that's because of his teeth or what. Im not sure what he weighs right now, my guess is about 13 lbs. he is still wearing size 1 diapers and 3 month clothes. He is such a good baby! I can't complain about anything! He's so happy MOST of the time. I just love him to pieces!

New way of sucking his binki - with his bottom lip underneath it! 

Sleeping today on Mommy

New favorite toy - a milk jug!

Went to dinner the other night and Maximus had a major blow out all over his clothes! So I changed him in the truck and put a new diaper on him but didn't have ANY extra clothes because he had a blowout on the way home from Bear Lake this same day and I hadn't repacked the diaper bag. We had a few more stops to make and didn't want to take our naked baby inside the stores so Tony ran into Burlington and found him this gangster Jordan outfit! Needless to say Tony was pretty excited about finding it for him and now he wants matching Jordan shoes to go with it. We may have to find some on the internet.

Tony is still working two jobs. His real estate is doing pretty good. He has 4 potential buyers and is still working on getting some houses listed. If you or anyone you know is interested in buying or selling send them his way!

I have just recently become a Paparazzi Jewelry consultant and I'm really enjoying it! It's so fun! Please host a party with me if you have time and can! It's a lot of fun and you can earn free jewelry.

Well I think that's a long enough post to bore you, most probably didn't even read it this far. But if you did thank you! And hopefully I'll learn to post more often so as not to make it such a long post!

Ta ta for now!

-B

Baffling the Dr's

This past week we have been to 3 different Dr's. Here is each update:

Dr. V - Ophthalmology: Spent 2 hours at the eye Dr, found out that Maximus can see out of both eyes right now. The left eye is definitely weaker and smaller and he may lose some vision in it over time. So thats good new! The Dr was really good with Maximus and very knowledgable about the colobomas in his eyes and how the are developing. We are really happy with this Dr and we will be back to see him in 6 months to make sure that Maximus stays on track with vision. 

Hanger Orthotics: We went to see if Maximus needs to get a helmet or not. This is the tough part, the Dr there said he doesn't necessarily NEED a helmet BUT he could benefit from wearing one, so its up to us as parents. I'm torn, because if his hair doesn't grow in because of his syndrome then I'll want to shave his head. And if we shave his head I don't want his head shape to be funny or bad. But do we want to put him in a helmet just to get his head shape more symmetrical? I don't know. He will only have to wear it for 10 weeks. So its not too long. Plus, our insurance probably will not cover it because its not a medical necessity. So we would be paying out of pocket for it which will be about $1500.  What are your (anyone who's reading this) thoughts on this, what would you do? 

Dr. U - Pulmonary: Spent a few hours at Primary Children's on Thursday to see about Maximus's Pulmonary Hypertension. We also were very impressed with this Dr. He explained what was going on as far as the hypertension and what could be the likely causes (airways blocked, vessels not getting enough blood supply). Then he asked us if Maximus snored, stopped breathing, breathed heavily, struggled breathing, tires quickly, ect.). We told him that he doesn't do any of those things and that he sleeps very peacefully and restful. We have never heard him snore, stop breathing or anything. And he is extremely active! He never stops moving unless he is asleep! So the Dr was pretty baffled (hence the title of this post). He said based on what we are telling him it doesn't sound like the hypertension could be caused by any of the normal signs, but just to be sure we aren't missing something he ordered a sleep study to be done on him. So we will be spending a night at Primary's on the 11th for a sleep study. If everything appears to be normal we will meet with a couple of cardiologists and our primary care physician and Dr. U to see if doing a surgical procedure is needed where they stick a cath up Maximus's carotid artery and up into his lungs to measure pressures. He also told us that he didn't think that Maximus would need to be on oxygen his whole life, usually the hypertension will correct itself over time and we could wean him from the oxygen. So I'm hopeful for that. 

This is my little man currently, sleeping...

Here are a few more pics from the week and another video

Me and the munchkin on the 4th of July

Playing with glow rings on the 4th of July. He was not too sure about the fireworks we lit. He kept putting his hands over his ears every time they went off! But he never cried, just didn't know what to think.

Eating ice cream with Grandma Rose

Watching Elmo 

Just being my cute self!

Anyways, that is currently what's up at our house! Also Tony is working A LOT, he is doing really well with Real Estate. Has a couple of people he is working with to buy homes. If you or anyone you know is interested in buying or selling a home please give us a holler! He would love to help out!

I also just became a consultant for Paparazzi Jewelry! I am very excited and will be hosting my first party at my moms house next weekend on Saturday the 14th! If your interested in coming, let me know and I can give you the details. Or if you can't make it but would like to host a party at your house it would be really fun, just let me know.