Wednesday, February 13, 2013

We have a talker!

Brystal is such a talker. She learned to say no, but it comes out "na. na." She waves her hand around when she says it too. It is cute now, but it probably won't be in a couple years lol. She just sits playing with her toys and she jabbers on and on. Just talking to her toys. It is the cutest thing ever. She is really becoming her own person. It is amazing to watch. When Sophie was little I had to work full time so I wasn't there like I am now. And I feel like I missed out. I love this stage. Brystal is so independent. It is amazing to watch her do things on her own. I love how she is starting to play on her own and play with her sisters. She loves to play with her sisters. She is always crawling to wherever they are. She has to be with them all the time.

She is also eating more and more every week. We are still trying out the Avent cup. She wouldn't use it for a week or so, but I have been working with her this last week and she is doing a lot better. It is great to see her progress. She is still drinking her bottle, but less and less every day! It is great. She is half on Soy milk and half formula. I'm happy we are finally making some progress. She is seeing her physical therapist once a week and speech/feeding therapist once every other week. We have EB Clinic in February. I can't wait. I have a lot to talk to them about. Brystals PT and I both think she needs braces for her legs. She is pigeoned toed and her legs bow. They say kids normally grow out of it, but Brystal still isn't walking and healthy babies walk at 1 year. I am worried her bones will harden before she can walk fully on her own. 

We had family pictures done over the weekend. I am so happy how they turned out. Brendan and I were worried because the girls were being little pains. Lol. But they turned out so amazing. I should have known since our photographer is amazing herself. I don't know if I mentioned this the last time we did pictures but she contacted us once she saw Brystal on the news in Tucson in August. She said she would do our pictures anytime we wanted free of charge. Which is awesome because pictures are so expensive.

I also finally got a start date for school as well. I don't know if I mentioned it in my last post, but I had a lot of difficulty getting signed up and what not. Well I am starting in March and it is all online. I am ecstatic. I should be done with school in about a year and half. I can't wait. Everything is coming together. Not in the exact order I would like, but hey! Everything has a way of working out. Tuesday I took Sophie and her best friend to school. While in the car Sophie was telling her how Brystal was in my tummy and that she got owies because she bumped too much while in there. And that she is an angel so they have to be good. I thought this was the sweetest thing I have ever heard. She loves Brystal so much and is so proud to tell everyone she is her sister.

Brystal is doing well all things considered. We had a couple of weeks of huge horrible blisters. Last week she was crawling and just started screaming. I picked her up and was consoling her. I couldn't figure out what was wrong with her. The next morning when she woke up she had a massive blister on her thumb. It was so big her thumb looked swollen. She was also blistering so bad right where the top of the diaper sat on her belly. It was not healing. And the wound would stick to her diaper. So every diaper change was horrible and she would scream and bleed all over. It was unpleasant for everyone. Brendan bought diapers last week and they were Huggies new kind and they are amazing! I am so happy they work for her. They are so soft! Her two spots on her tummy are healed almost all the way now.

I just want to thank all of you that read our blog and see what life is like with EB. I know Brystal isn't as severe as some others and that she is doing so well all things considered, but life with EB is difficult and a very long road. Doing bandage changes doesn't get any easier. Seeing your child in pain doesn't get any easier. I am used to the blood and the infection and the SMELL of EB. But what Brystal and all the other babies go through we will never understand.

So I started the above post last month and am now just getting back to it. Things have been so hectic! Brystal started standing on her own as of last night! I am so unbelievely proud of her. She is reaching these milestones so much quicker then we thought would happen. WE are all proud of her. She is still saying NO. And it isn't as cute as I thought it was a few weeks ago lol. Everything is No. Want to take a bath? No. Want to play? No. No! She says it with such demand and force. It is some what funny lol. When she says no we are now saying YES right back to her. She also learned how to climb onto Emilys bed. I have to keep putting up the baby gate because she no darts to her sisters room to climb on the bed. She isn't too fond of the baby gate.

She is back to not eating again. She will chew on food and then spit it out. She is also doing this gagging/choking thing. She will be fine playing with her toys and out of no where she will start choking. She has spit up a few times from it. After seeing her GI doctor last week he thinks she will have to have another upper GI done and this will be the 3rd one in less then a year. The last one we had the doctor was VERY rude and left marks on brystals legs. I know we won't get that doctor again, but I just hate to put Brystal through that.

Brystal didn't for to EB Clinic this month. Her doctors changed it for next month. I hope we get some answers. Her leg just doesn't want to heal. We are going to ask about skin graphs. We think that it might help her out some. I am hoping the bottom of her feet don't start to blister since she is standing now.

I myself have been over stressed out. We were having such a few good weeks and then it felt like nothing can go right. Brystal standing on her own helped me a lot yesterday. I wouldn't change a single thing about Brystal, but her medical stuff has put a lot on us and at times it is more then exhausting. I don't know how some other parents do it. I feel like I am missing something? They all make it look so easy and what not. Some days are a struggle for sure. There are so many things I wish I could do for the kids but can't. Hopefully something good will come our way. I'd take anything right now. I know the girls are all happy and that is great!! As a parent I guess I just want more for them. I want to give them everything. We are looking into me getting a job on the weekends. That is the only time we would be able to have someone watch the girls. I haven't worked in almost a year. It will definintely take me time to get used to and be away from the girls. Being a stay at home mom has been a blessing. OKay, I have to go. I hope I can do another post soon!!! <3

So proud of herself for getting on it!!

Playing at the Doctor!

Love how our pictures turned out!!

My FAV picture <3

Doctor :)

Best big sisters

Look who is standing!

Brayce :)

Thursday, January 3, 2013

Where to begin..

These last few days have been so hectic and out of place. But let's start with all the good things that have been going on lately! We had an amazing Christmas. Probably the best yet. We had a great time watching the girls open up all their gifts. We want to thank EVERYONE that sent the girls something for Christmas. Especially The Butterfly Fund. They are amazing and the girls received so much. It was over the top amazing! If that makes sense? Haha. Our new year was great as well. Brystal and I spent the night in the hospital while my bestest friend had her son at 10:47pm on the 31st. Definitely a great way to bring in the new year. I am truly blessed! <3

The girls are doing wonderful. Sophie is on winter break from school so it has been nice to just stay home with her and not worry about taking her to school. Emily is FULLY potty trained now. She isn't even wetting the bed. We are so proud of her. And Brystal. She is great. We have our "moments" but other then that shes perfect. She has been blistering a lot lately. We don't know what is going on, but she is having some sort of break out as of late. Maybe the cold weather? We aren't sure. She has been going to see a speech therapist for her bottle transition to cup. It is going fairly well. We have gone through over 10 different kinds of sippy cups. I didn't even know that there were so many different ones! But we finally found a good one for her. We are just having troubles getting her to forget about the bottle. She carries her bottle every where. It is like a security blanket for her. Even when it is empty I can't take it from her. Lol. The cup we found is made by Avent and it is spill proof (love) and it is amazing. It doesn't have a spout like normal sippy cups which is good b/c she either couldn't suck on it or she couldn't find the right area to drink from. This cup she can drink from any area like a normal cup except when she tips it to drink her nose lightly presses on the sensor and the drink comes out. I absolutely love it and recommend it to everyone. It is a great transition cup to a regular cup which will help her go to regular cups when she is ready. Saves us an extra step!! :)

Okay so back to our "out of place" last few days. As I mentioned before my best friend had her son. I was able to be in the room with her when she delivered and it was so... normal. I felt a bit of jealousy. I got to cut the umbilical cord which was amazing and SO HARD since I was crying and couldn't see! Haha Yes I am emotional. But the last time I witnessed a baby being born was Brystal and it wasn't the BEST time. I just kept thinking, "This isn't what it was like for Brystal. Wow it is crazy how rough they are!" And I was so jealous, hurt, sad, happy, excited and emotional as she got to hold him on her chest for that bonding time when he was first born. She was able to breast feed him. There wasn't anything wrong. It was perfect. I was so MAD at myself for feeling jealous and hurt. A healthy baby was brought perfectly into this world without a single problem. Why was I acting this way? Ugh. I should have been nothing but HAPPY. Not hurt? I didn't want him to come out with a single thing wrong. That's definitely not the case at all. I just kept thinking how it was with Brystal and how horrible the situation was at the time. Brendan and I were over joyed when we found out we were expecting since it was our first baby together (I don't know if everyone knows but Sophie is mine and Emily is Brendans) so Brystal was the one that connected us all together as one BIG family. It was supposed to be perfect. And it wasn't.. I wish I would have been more prepared for Brystal coming the way she did. If only I could go back to that day. If only I knew what I know now. When people talk about how they just want a boy or girl or whatever I just want to hit them and say be happy that you have a healthy baby! You rarely hear about unhealthy babies and when you do its so RARE! When Brystal was born all I remember was hearing the doctor ask whats wrong with her leg? Nurse do you see this? That's NOT the first thing a mom should hear. I should have heard the nursery bells they play when a babies born or the doctor congratulating me. No.. I never thought anything like this would happen. Blah! I don't know... I have been super emotional lately. Mood swing after mood swing. It's like seeing him born opened up a closed door :/

I am so stressed out lately. I can't seem to get caught up on anything. Brendan and I are going through a lot with Social Security and what not. I am not getting anymore money and since I stopped receiving money SS won't give me the full amount till March! So we went from getting $960- $1200 a month to $200. And Brendan doesn't make enough to pay all the bills. It is just so overwhelming. I also signed up for school and now I can't start till February and I had class this coming Monday that I have to drop b/c they didn't get everything done in time with the holiday season. It is just ugh. It seems like nothing is going our way. Except that the girls are healthy and happy. I am a firm believer in everything happens for a reason. I think that something better is too come but there is no telling when. Hopefully soon?

Okay so back to Brystal! She has pt in about 30 mins and I can't wait to see how she does. She is super close to walking on her own. Today she was walking with only holding one of my hands. I am so proud of her and all her accomplishments. She is amazing. She now gives high fives. Shes such a quick learner. And she is always wanting to be with her sissies. She is always crawling to them to see what they are doing. It's too cute. oh! So we had Brystal on Almond milk and it was working but it didn't half nearly enough calories and she was going through a whole carton a day! Now we are on Soy milk and she is having the worst diapers. I am hoping she isn't allergic. She has been bloated and constipated at times. I am giving her less and less each day to see if it helps. We are trying to get her to eat more baby food and regular food every day. Some days she does awesome and eats everything and others she won't touch anything. I am hoping she starts to eat on a normal schedule. Hopefully soon lol

Okay Brystal just got up from a nap so I better go. Hope all of you had a wonderful Christmas and New Years! <3

This was her wrist the other day :/

This was her armpit and side this morning.

Her new shoes! <3 The only ones that fit and don't cause harm!!

Loves her new ride on!

My best friend and Brystal <3

Her new play area with ALL of her Christmas toys.

This is her new cup :)

The girls sporting the Arizona Wildcats <3 Christmas outfits lol

Christmas! Her messy face from snacks.

We finally received an order of supplies! This is only for one month!

Wearing her new shoes! Lol

Brayce :)

Friday, December 14, 2012

At a loss...

So by now everyone has heard about the shooting in CT. It really affected me today. Having Sophie in school for the first time this year made me scared. I don't know what I would do without my girls. While I was driving this afternoon the radio station here in Phoenix was doing a tel-a-thon for St Jude's Children's Hospital and they were trying to raise money. They had parents telling stories of their loved ones that had lost their fight against cancer. The clips were making me bawl like a baby! I couldn't stop crying while driving down the road. I called and made a small donation, but I wish I could have done more for them. I am a stay at home mom. I don't work a 40 hour week job with a commute. I am here ALL day (besides doctor appointments)! I should be doing something to help others.

It got me thinking and I can't donate my time and volunteer any where because I wouldn't have anyone to watch Brystal. I am going to look into do things at home to help others. I don't think it is right for a parent to attend their child's funeral. I am thinking about trying to find away to use my free time to help others while at home. I know there has to be SOMETHING I can do. I feel like just sitting here isn't enough. Maybe my girls will grow up seeing what I have done and want to do things to help others as well :)

A little update on Brystal. She went to the speech therapist and we are still trying to find a cup that works for her. So far we have tried 5-8 different cups and have not found the one that works for her. She isn't eating enough food and only drinking her formula so it is harder to transition her. I wish she would eat more because WIC has lowered our formula per month and Brystal is going through A LOT more then what they give us and her formula is $41 a can. It is ridiculous. We are going to try soy or almond milk soon. I am praying that she doesn't have some adverse reaction to it.

Brystal also had an upper GI done last week. This was not fun whats so ever. The doctor was very rude and left a bruise on her leg. He is so lucky that he did not tear off her skin. I did report him to his management. I also had something put in her notes that he cannot work on her. He even knew about EB and treated her so bad and gave me a ton of attitude. It was difficult. I even said, "Let's remember she has EB and we HAVE to be gentle with her." The nurse was so nice and understanding and listened to me which was GREAT but not the doctor. I just can't stand doctors that think they know more because they went to school when in all actuality they don't. They don't take care of that child day in and out. They aren't there for bandage changes and what not. It is so frustrating.

I don't know if I mentioned before how Brystal had to have her leg cut open so the infection under her skin could drain? Well that happened last month and now she has another spot on the other leg. The doctor wants us to wait to see how it goes on its own and do warm compresses twice a day for 10 minutes. It is so very hard to get her not to move and to keep it on her leg for so long. I am hoping it goes away on its own this time. Last time was very traumatizing!!!

On the upside Brystal is doing very well. I am very thankful for having such a happy baby. There are moments when I thank god that she isn't worse. Things could be a lot different for us and they aren't. I have to remain positive. Brystal definitely has changed me and made me a better person. I love to take a step back and see what I am blessed with. I have the best girls anyone can ask for. They are growing up so fast and I don't want to miss a single second. Take a minute to see what you have and not worry about what you don't have or the what ifs. Once you do that you can accomplish anything! Good night! <3

Love her and how happy she is after a bandage change <3

Most recent picture of her leg. You can see a blister on the top of her foot as well as her toe nails.. the few she has and the deformation that EB causes.

We designed stockings with one of my greatest friends and her daughter. Definitely a great day for us.

Her smile makes this journey worth every second. Just love how her teeth are coming in so WHITE and STRAIGHT!

Just took this picture before bed. She loves to point and LOVES to take pictures when she can see herself on the camera :)

Tuesday, December 4, 2012

Brystal's 1st Birthday!

I am so sorry this is so late! We just have been soo busy and caught up in everything! We had a great Thanksgiving! If you don't follow Brystal's facebook page you have no idea what I mean by busy! Lol Well we have been going through a lot these last few weeks. Brystal turned one (yay!), Thanksgiving, broken washer, Insurance problems again, Social Security thinks we make too much (only Brendan working), and Brystals health. It has been pretty stressful and hectic here. There have been a few good things going on though :) Brystal is ALMOST walking. She is super close. Her pt thinks she will be walking soon! So keep your fingers crossed. We are in the process of getting her off the bottle! Not my favorite thing about turning one but we will do it! Let me tell you about Brystal's birthday!

Brystal was sooo good. She had a blast. As did I!! All of our close family and friends were there! I wanted to say Thank You to my bestest friend. You know who you are ;) She is definitely my rock and surprised me by comig to her party. She started her new job and didn't think she would be able to show up! Anyways! Brystal got a ton of giraffes for her birthday lol. I'll Have to take a picture of all her giraffes and what not. She is too funny. And she got a lot of toys and CLOTHES! Yay! She was in such a great mood! I was beyond thrilled with how well she was. She didn't have the greatest nap but she did awesome. She even ate her birthday cake! She demolished it! Omg I have a million pictures of her eating her cake. It was the cutest thing. Of course we went with a butterfly and faire theme. It was so perfect. I doubt Brystal noticed it lol. But everyone else did so ya ha.

Okay so I wanted to post more about her birthday but I feel like there are a lot more things going on at the moment that I can't "remember" all the details. Brystal is very fussy and cranky. She has 5 teeth (3molars) coming all at once. She was constipated for a week, but now has diarrhea. She had OT today and we tried out two differet cups for her use. She isn't a fan of either. One of them cut her lip so I doubt I'll be able to get her to drink out of it and the other one doesn't have a valve to adjust her drinking intake and it really worries me. I don't want her to choke on it. She also has a swallow study next week as well as a PT apt and another OT apt. She is going to be one busy girl. It is a good thing I got all my Christmas shopping done and out of the way :)

We are having a lot of trouble with getting Brystal supplies. We just don't have the money to pay for them since Brendan is the only one working and we don't qualify for SSI till January. It is so stressful. We have been calling supply companies to see if they take our insurance but NONE of them take both our insurances, and the ones that take her secondary which is Medicade won't just run it because it is a secondary and NO ONE does that. It is so crazy and beyond stressful. I just don't know what to do at this point. We are waiting for a call back from her nurse this afternoon. I spoke with one supply company she told me it was $35 a day for one of the supplies we are using on Brystal. And we are responsible for paying 20%. She told me our cost would be around $500 a month! We can't afford half that! It is crazy. I hope we find a company soon.

Last weekend there was a walk in Sahuarita, AZ and they raised money for the dance studio and a few families brought toys for the girls for Christmas. A few even brought some clothes. It was so nice of them! We are in works to do a walk just for Brystal. I am hoping we can do it in March or maybe even April before the weather gets too warm. I will keep everyone updated on that though!

I am hoping that I can update better now. I know I probably say this a lot but I am going to try hard. I feel like a lot is going on and I get lost in it all. The girls ad I are doing projects all week until Christmas. We are starting our own traditions this year and I couldn't more excited. I hope that everyone had a fantastic Thanksgiving and that they continue to have a great time the rest of this year :)

Birthday Outfit <3

Present time. She wouldn't put down her giraffe.

Passed playing after everyone left her bday party :)



Birthday card from her Derm team <3

Great Grandma!

Helping me wrap Christmas presents for sissy's.

Helping me bake cookies for Thanksgiving.

Birthday Present from a family friend arrived in the mail!

Sisters at the park!

Lol LOVE this picture. She looked at me with this smirk after trying for 10 mins to get a picture of her lol

Random snow pile at the park. The girls were beyond excited lol


Swinging with sissy's at the park!

Two of her teeth. Bad picture but only one I could get lol


Thursday, November 8, 2012

Happy Birthday Brendan!

Happy Birthday to Brystals daddy! I should probably be asleep, but my mind is racing tonight. I feel like it has been too long since I have posted so I thought that I would post an update while I have all these built up emotions! I need to vent!

If you follow us on Brystal's facebook page you know how crappy her last few weeks have been. It is so hard for me to watch her go through all this pain. I am so emotionally drained lately. I think I do a pretty darn good job at holding back my emotions to everyone and putting up a poker face. I don't know. Just tonight after our bandage change a lot has been on my mind. Also, a family member is at the hospital getting ready to bring a baby boy into this world and it is a bitter sweet moment for myself. Brystal will be one on Saturday ( yay!) and I am sitting her remembering every second of the day I went into labor and every feeling I felt when she was born.

When you find out you are pregnant it is supposed to be the BEST thing ever. And it was with Brystal. We were going to have the perfect everything. We had everything setup and ready for her to arrive. And when that moment came, nothing and I mean nothing went the way we planned. The first thing they said when she was born wasn't anything you would EVER expect to hear... "What's wrong with her leg? Do you see that?" As a mom I didn't even know what to think. I just remember looking at Brendan like uh? What? Is this real? I remember asking him "what's wrong?!" Then they handed me her and I fell in love and thought "OMG she has hair!!!" We didn't think she would have any! But she did. And then they took her away. Scariest most terrifying 4 days of my life.I will always remember the ride in the ambulance. The first time I heard Epidermolysis Bullosa. The images we saw online.. I can't believe it will be a year on Saturday. A year of Brystal <3 A year of watching my family grow! A year of EB....

I am so thankful for what this is teaching me and what I continue to learn. Not a day goes by that I don't wonder why Brystal has to endure such a horrible painful life. Not a day goes by that I wish they would find a cure already. So many babies are being born recently with EB. It is heart breaking. I hate knowing that every single one of them is going through what we went through. I do not wish that upon anyone. So many people take things for granted and don't appreciate what they have. No one expects to have an unhealthy newborn. It just isn't something you see in movies or hear about until it happens to you or someone close to you.

Saturday we are having a party for Brystal. I am so excited. I am also sad. Where has this year gone. I think having so much to deal with makes the time fly by! I can't believe I haven't worked in over 6 months. Sophie and Emily are so excited to eat cake for Brystals birthday. It is so cute to see how much they love their littlest sister. The girls are such great big sisters for Brystal. And Brystal LOVES them. She can't get enough of them.

So in October we had an awareness event and the hospital tried to raise money for the EB Clinic ( Not sure how that part went) But we were asked to give a speech... I was beyond thrilled. I got up there and 3 sentences in started bawling my eyes out! Luckily Brendan was there to save me! I was so mad at myself. I really really wanted to tell Brystals story and talk about how AMAZING everyone is at PCH. We were able to get pictures with a lot of people. We even got a group photo with Brystals entire derm team! I am waiting to get a copy sent to me. I will definitely post it as soon as I get it. Dr. Price is the best doctor ever! And Nurse Kellie is just plain amazing. I love everyone there. We couldn't ask for a better team.

Ah I have so much more to say but I don't want to drag on and on and bore you to death! But I promise to write a whole post about Brystals birthday! Stay tuned!

OH! I just wanted to say thank you to everyone who donated to our fundraiser! You guys blow me away! You guys raised over $4000! That meant the world to us. It really helped us a lot. We got a few things paid off with that money. It was much appreciated. It was a start for us to get back onto our feet! We love you all!

This is what her leg looks like today 11/8/12

This was her tongue last month :(

We celebrated her birthday tonight even though it was daddy's birthday :)


We had a cyst removed on her leg last week. This is the cut they made.


They are amazing together! <3 these girls!!

Naked baby!

Happy Halloween!!!!!!!!! <3