bad news

well we have received the worst news possible. Our son has the same condition as Lua so we know we get to relive the nightmare all over again.
there aren't many other things to say at this point. Maybe later.

4k & gymnastics

Our oldest has been showing a lot of interest in wanting to learn to read... originally I had given up on sending her to a preschool type thing, I had looked into a few things when we first got to the new town but the option they gave me was way to far away. I didn't mind if she didn't go to anything, she just turned 4 unlike the kids who are all most likely turning 5 in the next few months, and since I don't work full time I don't have the huge need to send her off... also I lost my baby and I think it is okay if I want to keep my children that I do have home with me a little longer than most. But we found an opening at a place very close to where we live, like 3 mins away, and it is for only a couple hours 4 times a week, so we figured we would try it out, if she hates it I'll just pull her out and also we don't know what will happen January, if we are going to be spending time in the NICU I'm not going to go out of my way to try to figure out how to keep her in it and add to any extra stress. Anyway today was her first day! She was asking to go all morning long, she only starts at 12. I think she may have been a little nervous and I could not get her to eat, just nibbles here and there, and I was so nervous I couldn't eat!!! but the time came and we went! She started off very excited in the car, waited patiently while we finished paper work, but as soon as we got to the class room she started to get overwhelmed! I told her I would stay until she was ready, but she was getting a little worse the longer I stayed. So one of the teachers had her come give me a really big hug, she started sobbing!, and had to say good bye. I'm sure she cried for a little bit, but with all the other kids there the teacher said she did good. Towards the end of the day she started getting tired and asked when it would be time to go home. She was really anxious, and I got there a little early, she was all ready to go haha! She started balling as soon as she saw me, poor girl. But sounds like it wasn't terrible. I am hoping tomorrow will be easier for her. She did tell her daddy she was pretending to not cry all day because she really missed us... haha. So honest.
But what she does like! Is gymnastics!!! On short noticed we stopped in last week to see when it started and it happened to start that day, so we signed up and went! At first she was NOT happy about it because the lady while registering told her I had to go outside and wait for her, so she got really scared about that. When we got there, though, the parents get to sit in the room in the back, so that made her super happy then she couldn't wait! She did flips and hung on a bar and did an obstacle course. That was a blast, and it was the Best Story EVER! She had to call grandma, and grandpa and tell them all about it and how much fun it was! Tomorrow we have gymnastics again so hopefully that will make up for the 4k.
Aww why do they have to grow up so fast :( 

ultrasounds

I enjoy the days when it was exciting to be going in for an ultrasound... But for us lately, ultrasound appointments are depressing. We leave feeling terrible, scared, depressed... Every bad emotion you can feel. I so badly ache for good news.
Everyday seems like a battle recently. There are so many things we need to consider.... We could be looking at our baby having the same issues Lua had, maybe it could be not as severe, or maybe he could be 100% healthy, but if he is, no one will believe it until he is born and tests have been done. This is not the pregnancy I was expecting. I guess I should have known it would be difficult compared to my last two because the ignorance of a healthy pregnancy has been stripped away from us, but I still didn't picture it being this hard.
This Thursday we have our next ultrasound, another very important ultrasound like the last one. It has come to be decided that if he is in the same position yet again, then he most likely has the same genetic issues Lua had. May be a different outcome, but we are still looking at a scary situation. With the diagnosis they are giving Lua, the doctors from Milwaukee want to say that Lua was so severe because of her birth trauma. They want to say this because that way it would explain her diagnosis better because her 'diagnosis' is suppose to be early child onset, luas was evident at birth so this helps them get away with saying she fits the profile, she just had a terrible start that caused a lot of movement damage. Originally we were told she recovered very well from her birth trauma she just had a very severe condition.... Whatever. So this time we can at least figure the best plan possible to cause the least amount of trauma done from the birth process.
It would be wonderful if this little guy could just start moving all over the place at this next ultra sound. I feel like I haven't heard good news from doctors in over two years and it really begins to take a toll on a person...

NICU family host

When we were in the NICU, we had a few people come talk with us about their experiences of being in the NICU and they were apart of a volunteering group trained to do this to help any families who are struggling with being in the NICU or if there were people who needed someone to talk to. I was kind of thrown off guard both times we had someone come talk to us, but lately thinking back, and especially when I hear of other people going to the nicu, I think how truly nice it was to have had those people stop by. The first one we met in Neenah children's, her baby was sent to Milwaukee as well and she gave us some awesome tips for when we got to Milwaukee. I should try to find her and thank her because she warned us on how the children's cafeteria was way worse than the hospital that was connected to children's cafeteria was, we saved a nice amount of money on that tip alone! And the second mother I met, it was just nice to have a break and someone extra to talk to. I spent my weeks mostly alone with lua while my husband worked and my mom watched may, so when she stopped in it was nice to have someone new to talk to. So lately I have been thinking about this program and asked our first nurse lua had, what all you had to do to be in the program. I was worried that I wouldn't qualify because Lua passed away, maybe I'd be too depressing to talk to people. Today I was able to talk to the coordinator and as unfortunate as my situation is, there is a need for those who have lost babies. So today I registered for the training to try to become a NICU family host and hopefully I can help other families in any way I can. The nicu will always hold a special place in my heart, we went through soooo much there, learned so much, met so many people, felt like we were there forever.... And I truly sympathize with families that have to go there with their babies. So I'm excited to be starting this up. The training will be in October, just after Lua has been gone for one year... Feels like the right time.

Limb Girdle Muscular Dystrophy 2Q

So the other day I wrote this Huge Long blog about finding diagnosis on Lua and everything that came with that... then at the end of it, I went to add a picture, and our fun no internet having to use our phone to use the laptop, froze up and when I refreshed it, the blog post did not save!!! So I gave up and figured that post was Not meant to happen! 
Earlier this week we went to Milwaukee to have another ultrasound and some genetic counseling. We were waiting to hear if me and my husband were both carriers of the Limb Girdle Muscular Dystrophy 2Q, because before we found that out, it couldn’t be for sure that Lua had this condition. Well they said we both do have the change in each gene so that means when Lua was made she got a bad copy from mom and a bad copy from dad causing the protein that makes muscle to not form correctly causing her to have this type of muscular dystrophy, which those who know what muscular dystrophy is, it is a condition you continue to lose your muscle abilities. Now don’t quote me on my explanation of what happened with Lua and the protein theory, it is my basic understanding of what we were told. So, my issue with this, is that Lua was very severe, I know situations where babies are diagnosed with some type of muscular dystrophy, but they still have more usage of their body than Lua had. There are only 2.... 2! cases of her exact diagnosis recorded, and they are both from Turkey. And in those studies, the kids were normal until 4 years of age. The geneticists all say this is the only thing that makes sense for what Lua had, she fit the profile of the condition. Well muscle weakness fits A LOT of different diseases and that is the only thing Lua had in common with these two cases that were reported. They also lived in their 30s and had no respiratory issues. They had eye weakness, Lua did not have, and they were able to walk at normal age, Lua wouldn’t have been walking at 12 moths. So I guess my basic understanding of this means, They are calling it this disease until medicine has caught up and found another name for what she truly had, I think they should maybe change it to Congenital Limb Girdle Muscular Dystrophy  2Q type 0, would that be too long of a name? Type 0 means the most severe type and congenital means present at birth, I think if the name was changed to this I would agree but I suppose a name by any other name right? She must have been the most severe of this condition ever. I recently joined a LGMD group and talked to the members who have this condition, amazing people! But most have never heard of a baby like Lua with that disease. I don’t know why this diagnosis bothers me so much, it isnt like I would be happy if they said yeah we found it was SMA type 0, but hey at least that would make sense. 
Here is the kicker and what probably bothers me the most... Since we are carriers of this bad gene, both of us... me from wisconsin, my husband from Sao Paulo Brasil, we will always have a 25% chance of passing it to any future children, or current baby, always. At our ultra sound little Mr. was of course not moving again!!! They have some concerns with his arms, jaw, and foot. Now while I support being positive and believing everything is fine with him, which it very well may be! I have my concerns!!! Thoughts of having to go through everything we went through with Lua all over again is a living nightmare, and I am stuck between deciding to either accept the worst, or deny the worst could happen. I have options though, and options are always great, right... 
We can do the amino testing, you know the one where they stick the needle in your belly and get some of the fluid around the baby. This could give us our answers right now if he has it or doesn’t have it. Unfortunately, what will it change? Absolutely  nothing except preparing us for worst case scenario. Delivery sounds like it will remain the same plan as if we didn’t know if he had it or not. And ultrasounds, keep doing ultrasounds every 4 weeks to check no him and watch for any signs that may give away him having the same condition or not. I don’t know about you, but I have refused an epidural each labor because the thought of that needle into my back scares me more than dying from pain... I can’t see a needle go into my stomach I am almost positive I will have a heart-attack if we went that way. Besides that, I don’t think I want to know. If they test him and he has the same change in the same gene Lua had, they confirm he will have the same condition as Lua, and he comes out healthy, Well Great! Thanks everyone for scaring the living crap out of me for the last 5 months!!! That is a very big possibility since I am not convinced they are even confident that this is the right diagnosis, if he is healthy and has the same change Lua had, it means we start all over with the diagnosis process... 
I am waiting to talk to my normal doctor later this week, I think that may give us more ideas of how to feel or which action to take concerning delivery which I feel will give me a piece of mind. So we wait. And we will wait until the baby is born to know for sure if he will be healthy or not. At least we know that we will love him unconditionally no matter how healthy he is or isn’t... and also we will need to stop the baby making process!

This day of the ultrasound was one of the more difficult days we have had in awhile, because not only did we have to receive a crap load of news, but we had to go through a family history, My sweet dear uncle Ron passed away early that morning before the ultrasound, so it was definitely an annoying time to have to go through, well, everything... His funeral will be Thursday... we all miss him already. 

Little Mr.

My Aunt Jill, Uncle Ron with Lua

A few of my Awesome Uncles, our ushers at our wedding... they really rocked it!

Ultrasound with baby #3

Yesterday we had our first ultra sound with the specialist.... During the ultrasound the geneticist who has been working on Luas case called with some information and a shortly after that the specialist doctor came in and said they believe they know what Lua had. Limb girdle muscular dystrophy. Which is a recessive disorder which means both parents have to have the mutation to pass it onto the child. That keeps us at having a 25% chance this baby has the same condition. And during the ultrasound there were some concerns about the baby's movement. Movement in the arms and wrists wasn't seen. The baby did move his legs a little at the end... So now with this new information they would like me to have an amnio test done to see if this baby has the same condition, and also I have to go to Milwaukee for a follow up ultrasound next week to check on the movement of the baby. Stress galore! The thought of it happening again is unbelievable. There is a bunch of things that need to be done to confirm lua had this disease but if they are able to then that means if we want to have any more kids we will always have a 25% chance of it happening again. Next week we should start to hear a little more on everything. But it seems now ill have to continue going to Milwaukee and who knows if ill be able to deliver at our local hospital or if it will become a forced csection in Milwaukee where the baby will be taken right away to be checked on... Who knows... Super awesome stuff..............

But pictures always help... 

Just updates

We are settling in to our new house. With all my doubts on if buying a house was a right thing or not, I have come to the conclusion it was a very good decision. We are paying less on payments than if we were to have rented the house we looked at before finding this house, and after what our last landlord has done to us with claiming we trashed his house, I am SO So happy to not have to deal with any landlords anymore! I still can't get over how much of a sneaky jerk our last landlord and his wife really are. They never told us of any problems with the 50 year old + house while we were living there, and they went inside frequently. They didn't call us and tell us of any issues after we moved out so we could go and fix anything. I had 3 people helping me clean that house, it was WAY cleaner than when we moved in, they didn't touch that house before we moved in and now they are all mad because they have to paint, clean carpets, (which none of that has been done in at least 3 years or more) and fix water damage that we had continuously told him about. I even cleaned those carpets twice while we lived there and once on the move out, 3 times! I can't be to blame if they put in a LIGHT blue carpet, what do you think is going to happen?? Carpet doesn't stay pretty for long! And it has probably been in that house for many years, So they use our security deposit to remodel their crappy house. Insanely wrong! Now we have decided to talk with a lawyer and see if we should move forward with anything or let it all go. I just can't believe people can be like this. They had a fit because the screen was broken, well the screen was broken because the cop had to break into the house the morning Lua passed away because on our rush to the hospital no one brought any keys. I don't mind fixing it, and he could have easily said, oh can you fix that.. Ok sure. But to act so mad about it, when you know why it was broken is just so heartless! Sneaky, sneaky, sneaky. Make you think they are your friends and then when it comes to money they screw you over. We could have not paid the 3 months we weren't living there while we were in the hospital. We could have really trashed the house, we could have been so difficult like so many renters are, but we werent! And we have never had a problem with any landlord before, this is just outrageous to me and so insanely stressful, so I handed over the whole issue to my husband and deleted the landlord from my phone, and blocked him. Just can't believe what a lying jerk he became. He did the same thing to the girl who moved out before us, might I add.
But anyway, moving on...
We still have no internet, so life has been interesting, this is how the other world lives! Right now we can use our phones, and hot spot on our phones but when I really start up with tshirts again the hotspot wont be enough anymore. I guess we are in too new of an area, one family has been living here for 5 years and they still dont have internet. But it really could be worse. It is nice not knowing you can be on netflix all day, or online all day. More outside time, more family time, if it wasnt for needing internet to do shirts, we may even consider keeping it this way. Truly getting away from it all. 

May had her big birthday celebration on August 2nd. Her friends and Cinderella had a tea party! The girls totally loved it! It was really an amazing day! I'm so glad she had a wonderful day after the current year she had. Unfortunately, she wont be getting a birthday next year because there is no way I could ever do a party better than this years! One little girl was saying, "We are in Disney Land!" Hahaha they all had such a great time. And Cinderella even sent them a card later in the mail thanking them for the tea party! Besides the two rain storms we had briefly, everything went very well. I will hopefully try to attach some pictures if internet allows.
As for now we are just moving forward, getting use to all these adjustments. Last doctors appointment the baby looked well, heart beat was good and we even heard the baby moving while the doctor was taking the heart beat... little thump thumps. We have our 20 week ultra sound with the specialist Aug. 20th, hoping everything is looking good at that point and we can see our little boy. I'm anxious for this ultra sound and wish it was just here already.

And as for Lua, well, she gained a cousin in heaven to spend time with her. I hope they have met each other, along with her great grandpa and he's grandpa. I hope it has been a great reunion. We will certainly miss Shawn. 29 years old, gone way too soon, it is still pretty unreal and unbelievable that someone so young could go so soon so unexpectedly. Funeral will be Friday and maybe more willb e written then.