BEST BIG SISTER EVER.....AVA

So I know that this blog is about Emma and her progress and milestones but a big part of Emma is her sister Ava. Ava has been working hard to move up in her gymnastics class. So I wanted to brag a bit about her. I don't know what we would do without Ava she has been our light at the end of the dark tunnel. She keeps us positive and moving forward. She helps Emma with Physical Therapy everytime we do it and she really wants to be apart of it all. She wants to go to dr appt. and she listens to everything she says and she likes to have conversations after the appt. We obviously don't let her attend appt that we feel she shouldn't but she wants to know whats going on with her sister and I don't want to ever take that away from her. After the appt. as we talk we help to clarify and questions that she has or we help her to understand better by using kid friendly terms. Then of course we come home and get the same appt. all over again by Dr. Ava, haha sometimes almost word for word. All I know is that Ava was ment to be Emma's big sister and she was sent her to make sure Emma get the most out of life. I love my girls so much and feel so blessed to be able to call them MINE/OURS :)

Ava at gymnastics (sorry between the fence shots)


Balance Beam - backwards-
So close to landing on her feet (her first try ever!)

Ava likes to take pictures and videos just like any other 4 year old and she likes to share Emma with everyone. Here is a video that she took today (Aug. 26, 2015) I love it! Thanks Ava for capturing special moments. See she's awesome we would be lost without her.
WE LOVE YOU BIG SISTER, AVA!

Decisions, Decisions, Decisions.....

As Brandon and I laid in bed on Monday night we wondered if we made the right decision...again. We talked about how what we thought used to be tough decisions have never compared to the decisions that we have had to make over the last 5 months. We hope and pray that we are making the right choices for Emma but only time will tell. On Monday we had another appointment with her neuro and we sadly have to say that the high dose steroids did not work :( so we are now in the process of tapering down her dose so that she is safetly off the medication. We talked about some other medication choices that we could try to help get Emma's infantile spasms to stop. This is tough for us for a couple reasons, first Brandon and I are working opposite schedules so that we can both be home with the girls (I went part-time) so that means he couldn't be and the appointment since he doesn't get off until about 7-8 pm. I was able to have him on speaker phone to help talk with the doctor and be apart of the decision making. One of the new options of medicine has a side effect of vision loss and we decided NO WAY vision is one thing that Emma does have and we do NOT want to take that away from her. Another choice was a diet (formula) but for this she would have to be admitted to the hospital so we also decided we didn't want to try that just yet either. So we finally decided to increase the current dose of Phenobarbitol that she is on already in hopes that she had such a great reaction to it the first time to stop the other seizures that maybe we might have the same good luck with the infantile spasms! We currently just gave her the 3rd dose of the increased pheno and we haven't seen much improvement (4 clusters yesterday, 3 today) but we are still hopeful, they say to try it for about a week before making any other decisions. We will contact our neuro again on Monday to update her on Emma and to see where we go from here.

Some of you have been asking what do the infantile spasms look like so I have decided to post a video for you. Someone posted a video for me to see to help know what was happening to Emma and I thank those people because infantile spasms often get misdiagonsed for acid reflux. Please if you feel something is not right with yout kiddo follow your gut as a parent I promise, you will rarely be wrong.



Here is a video from the day we took Emma to Primary Childrens Medical Center at 4 days old. I wanted you to be able to see the two different types of seizures that she is dealing with. Watching these videos clearly shows the difference between the two types. (big sister was really nervous and
didn't really understand what was happening so instead of crying she did what all kids would do try to make it a funny matter) poor kiddo has had to grow up fast but now she is awesome when Emma has a seizure she rubs her arms or tummy and says it's ok Emma big sister is here. Wow she melts my heart, the love they have for each other is the greatest love I have ever seen!

Basement Walls

Tonight was an AMAZING night for Emma and our family. Basement Walls (follow their page) put on an amazing show tonight in honor of Emma. We appreciate all the love and support we have received from so many. Thanks again to Taylor Waldron for putting this all together for our family. Donations have been appreciated more than you know, to help with all Emma's medical needs. We would also like to thank the following companies for their food donations to make tonight possible, 
SAMS Club in Jordan Landing 
T & B Vending
Kenny Lund from REAMS
Bruce from Smiths Marketplace (5710 west 7800 south)
Scott Griffiths from Smiths food and Drug (4080 west 9000 south). 

Thanks again and EMBRACE LIFE 💕
Here are some pics and a little video of the night.

5 Months and Sisters!!!

On August 20th Emma turned 5 months old! I cannot believe what a fighter this girl is at only 5 months of age. Here is a little information about Emma at 5 months old...

* Emma LOVES to eat!
* Adores her Big Sister
* Enjoys her legs and feet getting massaged
* Giggles...we are so close to a laugh (anyday we hope)
* Sadly she is currently on 3 different medications
* Loves her bathtime
* She weighs 14 pounds 4 ounces
* 24.5 inches long

SISTERS FOREVER

Ava has been so understanding these last months and she does anything and everything we ask her to do in regards to helping Emma. She is always watching out for her and talking to her every second she is awake. They communicate like you can't believe, whoever said Emma wouldn't be able to communicate was wrong they definitly communicate, even if it is just through LOVE! I also want to brag about Ava for a bit so check out the other posts she deserves so recognition too!

As I was looking through videos to find the one of Emma at 4 days old on the other post I also found this one and it melts my heart!

Update on Infantile Spasms

Good news and bad news.....Today we had another blood pressure check and it is still looking great!!! The bad news is she is still having the infantile spasms so she had to increase her dose from 8ml of medicine to 12ml. If anyone knows how hard it is to give an almost 5 month old meds I hope you have sympathy. Think Tylenol is only 2.5ml at this age so 12ml is so hard to get in her little body. It is quite the fight and makes us both end up in tears. But I know it's for the best so we just keep swimming....swimming! After this week we will dose her down for the next two weeks until she is safely off this medication. If she is still having the spasms we will have to resort to trying another medicine. Please pray this works I hate putting so much into this little body. As far as the side effects go she is starting to get fuller cheeks and is hungry ALL the time. Even at night she was sleeping from 10pm to 6am and now she wakes up more than when she was a newborn sometimes every 2-3 hours and of course this starts right as we are heading back to work (by the way we hate that summer is over 😢). The safest side effect is that she is very cranky. It makes us so sad because she is truly a very happy baby, so needless to say we can't wait to get our happy big back!

Here she is relaxing watching Doc McStuffins. Her sister Ava has taught her well. 

Here is another one I just love her ❤️❤️

She also got to swim for the first time. We were suppose to go to a family activity with a great group called Angel's Hands at Cowabunga Bay but since she can't be around too many people we opted to swim at grandma and grandpas house. 

She starts aquatic therapy in sept. And we are super excited about it thanks to our amazing PT. 

Well this sums it all up I think...any questions just ask :). Hope you are all loving every moment of your life with the ones that you love.....EMBRACE LIFE 💕

Utah Kids Foundation: Kid of the Month

http://utahkidsfoundation.com/MeetOurUtahKids.aspx

Emma is the kid of the month for August. We hope we can share her journey with others. We want to share her milestones and raise awareness for this RARE genetic disorder. We were excited to get her name and diagnosis out there. Please help us by sharing this blog on your Facebook pages, Instagram and Twitter. You can also share her Facebook page here is the link for that https://www.facebook.com/Embracelifeemma 

Thanks again for all your love and support

*side note. Emma had her blood pressure check today and it went fantastic. They want to make sure the meds are being handled by her little body ok 😊

Talk about a case of the "Monday's"

So my plan for Monday was to get a haircut and then hang out at home cleaning and doing laundry. Basically stay home!!!! Well things change quick when you have a special needs child, but I guess this is our new "normal". I'll explain a little more....

So last Friday Emma started having infantile spasms which is a type of seizure. I charted them so that I could email her neurologist and contact her on Monday.  So Sunday night I sent her an email and Monday morning at 9 AM I got a phone call saying that she wanted to see Emma as soon as possible to talk about a new medication and the side effects of the different types of medications. So I quickly went home dropped Ava off at her amazing grandma and grandpa's and we took Emma to see the neurologist at 11 o'clock. We discussed various meds and side effects. We decided on one, it is a steroid she has to be one for one month and hope that it will help to eliminate the infantile spasms. If these spasms aren't taken care of it will effect her more at the age of 3 and 4 than now (limited development). Where she will already be delayed we were so grateful that we caught these early. After that appt it was off to primary children's to get an EEG done at 1 o'clock. She was such a trooper during the EEG.  See pic below.....

 After the EEG we were sent home to wait for the results. Since our neurologist is absolutely amazing she called us within a few hours. The results were good for the most part. Since her first EEG she shows more epilepsy activity (which was expected) but the good news was the infantile spasms most likely haven't started to effect her brain (they didn't show up on the EEG). We caught it early enough so if we can get this medicine to work it would be the best case senerio for Emma. Most people let there spasms go for weeks before they call the doctor because they are hard to recognize. Good thing I'm an annoying over protective mother haha. They also said how great it was about recognizing her seizures at 4 days old too. For once I felt like a good mom not a crazy mom haha. 

So we started the meds soon after we got home and it was a disaster she stopped breathing and projectile vomited it all after only 1 ml yes 1!!! I was so scared. So we called the pharmacy and they said they would flavor it for us because it is very very nasty. It is now grape flavored and she took both doses today (Tuesday). Don't get me wrong it's not easy it takes about 10-15 min to get 4 ml in her and then again later in the day so she takes 8 total. The side effects are chubby red Cheeks and stomach issues. She was already on Zantac so that's good to help with her stomach. As I mentioned above this is for hopefully only one moth of this medicine. But during this month of meds and next month (so 2 months total) we have to be very careful who she is around due to the fact that it suppresses her immune system which was already a concern before the meds. No one can have vaccinations or live vaccines and be around her. Including herself so we will have to push back her 6 month vaccinations (sure she's sad about that lol). I am sure I am missing some info so if you have questions or if you ever have One please leave a comment here or on our Facebook page. We love you all and thank you all again for so much love, support and prayers🙏🏼💕 Embrace Life 💕

It's always nice to leave on a happy note so here is a link to cute video of Emma talking away to someone....I just wish I knew who 👼🏼. 

https://youtu.be/M_LryaPqfJQ

One more thing....how can someone who has been through so much in her short 4 months of life and still be so happy. This girl is a true miracle and blessing.