Happy 6 Months Emma

Today Emma turns 6 months old she has brought so much love into our lives and she has taught us so much already. She is such a happy little girl and so full of life. Here are some things about Emma at 6 months:

* Weight: about 15 pounds (dr not til next week)   Height: about 25 in long  

* loves talking (babbling of course)

* sleeps about 8 hours :)

* loves bath time 

* loves her big sis

* loves bananas 

* loves snuggles 

* loves being outside

* loves the mirror on her playmat 

* 9-12 month clothing 

* attached to her blanket (Aden & Anais)

  and her giraffe and cat WubbaNub

* still working on head control, rolling    

  over, sitting up. She works so hard  

  during physical therapy. 

* not a fan of tummy time but we do it 

  anyways :)

Here is a fun video of some pictures that have been taken over the last 6 months. Some is an understatement this isn't even close to what we have. Mommy is a pictureholic! The second video is a huge milestone for Emma...eating bananas!!! We tried last week but the poor girl was sick and it didn't go to well (we didn't know she was sick at the time). But today she LOVED it!!! Thanks to big sis for helping so much with Emma!

Slacker

So sorry for the lack of posting updates things have gotten a little crazy with me going back to work and dr appointments.  As for Emma she had her blood drawn 2 weeks ago and it showed that her phenobarbital levels were high so we could not increase her dose anymore and she was still having spasms. It also showed some sort of infection which we have had the unhappy chance of meeting this coulprit....cold/flu :(. To address the medication situation, she started zonisamide for the infantile spasms on Sept 4 and by Sept 7 we stopped seeing the spasms YAY!!!!! We were so happy to not have to watch her have those anymore they are so hard to watch and they seem to last FOREVER!

About the cold/flu we have sadly encountered it showed up at the end of last week. Poor thing had throwing up (yes throw up not spit up) and a million blow outs, sorry TMI. I was getting worried due to her getting dehydrated but luckily she started eating again and is wetting diapers. We will meet with the neurologist on Oct 5 and her pediatrician on Oct 7. She had a follow up blood draw today to check to make sure she is still doing ok with the drop of steroid, phenobarbital and zonisamide. Poor girl had the first arm fail in the blood draw and I swear that needle was in her arm for about a minute and she just kept moving the needle around trying to find a vein I thought I was going to pass out. And then here is Emma just sucking away on her pacifier and watching Litten Einsteins #toughgirl. The second arm was much better and still no tears, she is one tough little girl! Love her to pieces!

I have had a lot of people ask if we are still raising money to help with her medical needs and yes we are the link is still on the right side of this page but here is the direct link as well. Thanks so much for the support! YouCaring Account (link)

Here are some photos from the latest happenings. ENJOY and EMBRACE LIFE!

Tough little lady-after the blood draw today 9-17-15

Finally matching Jammies 😝😀

GO UTES!

Trying to help mom hold her bottle (by the way this is HUGE)

Snuggle time with mommy is a must everyday!

Hope to update again soon. Thanks for checking in :)

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 💕