Saturday, December 18, 2010

Sleeping brain & awake brain

Ok. So when Emerson is asleep her whole body relaxes her fingers and thumb open and she looks just like my Emmy. Why can't that be when she's awake? My next question since I am up so late I tend to go in Emerson's room and just watch her and Joseph sleep. Emmy was begining to wake a tad and stretched. Her arm went above her head and her other hand rubbed her face. And then she rolled on her side. Pretty normal right. Why can't she do that when she's awake? She always stretches when she just wakes up too. I mean when she's awake she trys so hard to do so much and then her tone kicks in or a damn seizure and thats it she starts all over and it's a vicious cycle.

So anyway no real reason for this post just up very late watching my baby sleep and wondering why the brain is the way it is. And I wish there was a special switch to turn off seizures and turn her brain back the way it was. :) Wishful thinking, I know. Anyhow if you have the answers to these questions please feel free to comment I would love to know why her brain allows her to do as she wishes while asleep or half asleep but not awake.  

Friday, December 17, 2010

When this kind of trouble strikes......

Emmy had a pretty good day today, mommy not so much. Today Early Steps OT came, Mrs. Diane and you know I really like her a lot. She is so sweet and explains everything very well. Emmy did well with her today. Great head control, great streching, and great grasping.

Today Emerson's wheelchair stroller (uhh the word wheelchair makes me cringe) came in. I am really having a hard time with it. *sigh*. Anyway it came in and the guy came and did a final fit for her. She fits pretty good in it, they just have to adjust the feet thingys. I don't know why I am having such a hard time with it. I mean I know it can be temporary BUT it can be permanent and I guess that's what scares me. The stroller is suppose to keep Emmy aligned properlly and it really does and you can tell she is sooo comfortable in it compared to the jogging stroller we have been using, so on the bright side Emerson is liking her chair. It's hot pink zebra print and her name is written in hot pink on her seat. I have a phone picture of it but it's not that good, so i'll post one later. The guy had to take the wheel  stroller back because there was a few things he needed to fix but we will be offical owners of it on Tuesday at therapy. *sigh*.

Mommy's other bad day is the fact that 45 min bathing rountines bite. lol. I mean I love doing it because it helps out my baby but it's really putting a strain on my back. Let me take you through our rountine............
First we underdress her get the water temp. just right get her bath chair set up and in the tub put her in and bathe her like a regular little baby who can't sit up (this parts not too bad but my back hurts) Take her out dry her off and the fun begins.
I use lotion and oil and massage her legs and feet. Then we stretch out both her legs for a 30 count and stretch her feet for a 20 count. Then I put her powder on from waist down and put her diaper on then her socks then her pants. Then it's her tummy. I use oil and lotion and massage her chest and belly clean her g-tube site and put bactroban on it (kinda like neosporin) Then I take more oil and lotion and massage one of her shoulders down to her finger tips. Starting with stretching her arm out horizontally for a 30 count, then stretch out her thumb and fingers for a 30 count and massage her little tiny hand. Then we stretch her same arm up vertically for a 30 count. Then we bring the arm down veritcally for another 30 count. Then I take her arm across her chest and stretch it for a 20 count (because that's all she'll let me do and fighting against her tone is rough). Then it's the same thing on the other arm. Then I clean her trach stoma, put bactroban on it and replace the gauze. The I put some oil and lotion on her face because it's really dry. Then I oil and lotion her back. Then I brush her teeth which she fights me tooth and nail, it's kinda nice to see but again KILLING my back hunched over like that fighting. lol. Then I put her shirt on. Then I draw up her medicine and give that to her and start her feeds. Whew.... just typing it wore me out. Really though it's not everything I do to her that's rough it's my back, wish I knew a better way to sit to support my back. And mind you I do all that in the morning as well except for the bath. And then if she doesn't have afternoon therapy then I do it again around 3. So she gets a total of 3 stretches a day at least. Ah well, gotta do what you gotta do.

And my last eh of a day.... heres a saying a NDSN friend told me "When this kind of trouble strikes, friends become strangers and strangers become friends." So true and it kind of makes me sad. Getting pregnant for my son at 18, I lost a bunch of my friends and I was ok with that and now that Emerson's accident has happened the rest left too. I know were not as fun anymore, I know Emmy looks and acts different, I know she can't do what your other 'typical' kids can do but I am still the same person, with a little added stress that I am trying to work through and having a friend there would probably make the process easier. I guess I am just going to have to get over it and move on. I can say though I am so thankful and blessed to have my family support, both mine and Brittens family have been great and I can't thank everyone enough.

I wrote a previous post about friends and I am writing again about it I guess because most of the people from NDSN understand because it has happened to them too, so I know I am not alone and not crazy I just wish they all lived closer. Anyway that was my eh of a day. But there's always tomorrow and I am looking forward to it because it's Emerson's second hippotherapy session. Can't wait. God Bless!

Thursday, December 16, 2010

Be Joyful Always!

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

This is a great verse, I wish I would have come across it sooner! Today has been such a wonderful day. First Daddy and I went out and bought some colored Christmas lights a few days ago to put around Emmy's bed and this morning she was just so intrigued by them, it was quite wonderful to look at.

Next let me first start off by saying that while in the hospital Emerson was tolerating about 10 bites or less of baby food a day, when we got home she started eating about a jar of baby food a day, well today she ate a WHOLE jar of baby food. I couldn't be more excited. Yesterday she ate her normal half a jar so I had half left for today and I gave it to her and she ate it pretty quickly. Well usually after a half a jar you can tell she's full and begins to get sleepy too well today she was a smacking away so I decided to get another jar and see, I mean if she didn't eat it I was just going to put it in the fridge for tomorrow anyway so no loss there. But she ate and ate and ate. This is such a big baby step in the right direction. I say big baby step because it is very big that she's begining to eat a jar of baby food but the nutritionist said that she would have to be eating that for at least a week to make any changes in her tube feedings and she'd have to eat three total jars at least before begining to think about getting the g-tube out. Which is fine by me but my point is that she is making baby steps in the right direction! Go Emmy Go!

Brings me to my next thing to be excited about today..... Emerson say her speech therapist today from Early Steps at about 2:30 well after she left at 3:30 her brother was about to get home, I needed to start dinner, and her meds were about due so I layed her on the sofa. While she was laying there I was just talking to her like I always do. Stroking her hair and her face and smoothering her in kisses (which she doesn't like too much she makes a face and goes into extention ah well I am not giving up on my kisses.) Well all of a sudden she started smiling, I yelled for my husband and he couldn't believe it either! This is exciting for us because in the begining I asked the doctors if we'd ever see her smile or laugh again and one in particular said probably not, the Emmy you used to know you will never know again. We never lost hope, everyday we'd tickle her in her favorite spots and get nothing but we continued in hopes that one day that beautiful smile would come back. The first time we saw her smile we were at Children's hospital in front of the ball machine contraption they have and she was sleeping in her chair and all of a sudden we saw her crack a smile, like one from a newborn and everyone tells you it's gas. lol. Yeah one like that. But I took it and ran with it!!! Well we kept seeing her smile more and more but it was always in her sleep we even saw her laugh in her sleep I say saw because her face had a smile and her belly was jiggling but no noise, so guess what it was a laugh. :) Then after we were home we had a follow up visit to her neurologist and we were waiting in the room and I was streching her and talking to her and did this run, run, run thing (posted in previous post) and she cracked the biggest smile EVER! And she continued to smile in her sleep and everytime I did the run, run, run but never just smiled because of us or just smiled AWAKE it was usually always provoked. So this was soooo big. I think it also means that her sight is getting better, God I sure do hope so. This week has really been a big week for Emerson and it couldn't have happened at a better time.

Here is Emmy's new feeder seat.... but we are returning it on Tuesday because she is about to outgrow it already, so her OT said from now on she is ordering a size bigger for these kids because from the time she orders it and it comes in the kids have pretty much grown out of it. Oh we found out that Emmy grew 4-5 inches since early September when we ordered the chair she's 35" almost 3 feet! WOW! Also too she is a little cross-eyed in this picture which I just started noticing her do. Not sure what that is all about, it's not constant or anything I have only seen her do it twice this week, IDK but she did that as a newborn-3 months. ?? No clue. Cute seat huh, but notice how snug it is on her....

Another thing that is going to be hard to explain. Emmy has just been different latley. Like more alret, more aware of her surroundings, just more like shes there. Ever talk to someone and you can just see right through them and your like "hello are you there or am I talking to a wall?" Well since June 28th I have felt like I have been talking to a wall, latley I have been talking to Emerson Louise!!! And it is the best feeling ever! I don't know if she is responding more because she can see better or what it is, in fact I don't care what it is all I know is that God is doing it and answering my prayers (in his time) and we couldn't be happier! Baby steps are always better then no steps, right? RIGHT!

Thinking about it maybe all this is happening because I came out of my dark place and began back on God's path. No not maybe that is why! God is so amazing and I hope to never fall again, however I am only human but I have faith in myself that I won't.

My next goal for myself is to seek God's forgiveness....I just have a few things heavy on my heart. Sometimes I feel that you know it was an accident there was nothing that I could have done and then other times I beat myself up and say WHY didn't I just bring her in my bedroom with me? I am also mad at myself for being the typical mom who wants to go to the bathroom by herself. I mean my son was NOT attached to me at all but Emmy was attached at the hip I couldn't go ANYWHERE without her crying for me or crying the whole time until I returned for that matter even if she was with daddy, and I'd get annoyed sometimes bc I needed me time and I feel so guilty about it, now I would give ANYTHING to have her follow me in the bathroom and be attached! Well like I said that is my next goal, seek God's forgiveness and more importantly seek forgiveness for myself, I really think I need that before I can totally move on. We shall see. 

I will be joyful always! And I will continue to pray! I will thank God for every situation; like my husband always always says "there is always someone worse off then you." And even though we are in a pretty upsetting position I know there is someone worse then us, and it actually makes me sad. Please continue to P.U.S.H. for Emerson! God bless you all!  

Wednesday, December 15, 2010

Dream

So I woke up this morning from the most amazing dream. Here it is before I forget it....lol.....

My mom's friend Mrs. Denise has a sister named Vicky and in my dream Mrs. Vicky was working at a shop in Baton Rouge and my mom, me, and Emmy went to visit her and her daughter. Her daughter had just had a baby boy. While we were there we were looking for dresses for Emmy and a bathing suit for Disney World. But then in my dream Emmy was just all better and I remember being on the floor holding her with her legs wrapped around me with her head in my chest and I was rubbing her back, hugging her, playing with her hair, smiling from ear to ear, and smoothering her with tons of kisses. I remember making a comment about how straight and perfect her spine was and rubbing my finger down her spine. I also remember asking Emmy a question and she responded with uh-huh. And I yelled for my mom to listen and I asked Emmy again but she didn't answer with the same response, so I asked her again and she responded with uh-huh.

Then I woke up. So that's all there was to the dream. Anyone wanna tell me what that's suppose to mean? lol. Hope you all enjoyed my dream this is one of the first dreams I was able to remember waking up, does anyone else have trouble not remembering their dream?

Tuesday, December 14, 2010

For I know the plans I have for you, 'declares the lord......


Emerson had therapy at Children's today and she did so wonderful! First in speech Patrice noticed that Emerson was more awake and more verbal (crying). Also she noticed her trying to track things. Like when she talked Emmy would move her head and eyes to her and then when I would talk she would move towards me. In PT Hiliary says she heard Emmy say "mom" I kind of heard it but I guess it's hard for me to really believe it. lol. Others have noticed Emmy saying "mom" before but again I just can't believe it because it isn't extremely clear. Hiliary said no it wasn't clear but it was a clear mmmmm sound. So that's awesome. Also Emmy followed me in PT today not my voice but me, which is awesome, yet again. Also Hiliary put Emmy in her walker again and she did fantastic with her head control and pushing on her legs. Her right leg still seems to be weak as it buckles when she pushed on her legs. That's ok we'll just have to keep strengthing them. In OT Emmy did well she lifted her head from a flat position and from a sitting position. So all in all she had a fantastic day in therapy.

 















As you all know I have found great support in NDSN website as all these moms are going through what I am going through. Everyday I look to see if anyone posted anything new so I did that today and someone who has a child that near drowned in 2007 commented stating that she was just begining the site as well and that her son was at Children's for therapy. I truly believe it was God bringing us together. And I am so glad that he did. She is a strong woman of faith and God has performed so many miracles for their family, and I am so happy that he did. As I was reading her blog I came across these bible verses and it just hit home......
"For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" - Jeremiah 29:11

"I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord." - Psalm 27:13-14

I know the good Lord has plans for my precious Emmy and for my whole family. I also know they will be in his time which has been my biggest struggle, but it's getting better. I am so blessed to have come across these two verses!

Now that I have been viewing all the blogs of the mom's and babies on NDSN I am excited, nervous for the future, and overwhelmed.

I am excited because of all of God's miracles in these babies, all of them have improved and so many of them are living a wonderful quality of life, which has been my main fear from day one. I am nervous for the furture because some children still improved but not as well as I pray for my Emmy to be. I am scared that Emmy could be this way. Of course I will love my Emmy and continue on this journey no matter the outcome but my biggest hope and prayer is for her to continue to heal and heal to 100% and the best quality of life possible. Now I am overwhelmed because since all of these mom's are so wonderful and want only the best for their babies and for them to get better they have all put their babies in non traditional therapies to help move the healing process a long, well since I have joined I have been told of so many therapies out there and am just overwhelmed at EVERYTHING they have. I want the best for Emmy and I want to give her the best chance to heal 100% with God's hand as well but I don't know which therapy to begin doing first, where they are, how much they are, how to begin getting funds for them, and the list goes on. So I have stepped back, taken a deep breath, and am putting it in God's hands. He will lead me to what is best for Emerson, as he already has and will continue to do.

I am so much better now then I have been in the last month. I know I got off of God's path for a little bit but I am back and ready to take on this journey. With my family and God nothing is impossible!!!!! God bless to everyone!

Monday, December 13, 2010

Hippo Therapy

Hippo Therapy..... no it's nothing to do with hippo's like big brother Joseph thought. It is a therapy involving horseback riding. Since the riding gently and rhythmically moves the rider's body in a similar human movement and riders with physical disabilities often improve in flexibility, balance, and muscle strength. So I have been researching this therapy since before we returned home from the hospital and we have been on a waiting list since October and finally had an opening so we began therapy on Saturday.


Emmy and Patches

Emmy got to wear the smallest helmet i've ever seen. The instructor said that she wanted to start off slow and learn Emerson. First off Emmy's horse's name that she rode was patches. Patches was the best horse I could have ever asked for my Emmy to be on. So anyway, First they put Emmy on the horse and Patches just stayed there while Emmy sat on top of her. Emmy was doing really well with her head control even with that big helmet on. Then they decided to take Emmy for a lap around the track. And she did so well. They said that when she got her head up she would look around as though to say "this is a new place, where am I?" So that was good to see. Also too I noticed that Emmy did great, the only thing is that she hated when the wind blew, and I don't blame her one bit.  


She said that Emerson is the youngest rider that they have ever had, which I knew before begining because they usually only start taking kids at 4 years old, but stubborn mom didn't want to wait till she was 4. However I did discuss this with her neurologist who said that it was just fine for her to begin this therapy that she just needed assistance and a helmet. Below is a video of her begining her walk with Patches around the track.





On Sunday I finally decided to take Christmas pictures of both my kids so we headed to Sears. It went really well except for the fact that it was Emmy's nap time and she was taking it weather we liked it or not, lol. But of course I had a moment. I had a moment I guess because it was slapped in my face that Emmy is not the typical 2 year old. Yes I knew that already but it just slapped me in the face while taking the pictures. But I bounced right back in a we got a few good shots of both my babys and some of just them and even some with their new baby cousin Luke.



Her play mat

Emmy is also doing a few new things She's taking her hand and she kind of shakes it and she's bringing it down by her side a lot more. She's also "helping" her PT get herself up off the floor when lieing down. Not a big help but it's help. Also too she's begining to roll over not all the way to her belly yet, but she's rolling to her side. She's using her tone and her feet to get her there but the therapist said that was normal that that was how she was going to begin rolling over, so we can't be any happier with that news. Also too Emmy is focusing a lot more. Especially when we talk to her she just stares at us. Her eyes use to sorda roam almost looking for something to focus on but now she's begining to focus on things. Especally the Christmas tree, she loves the lights. Also too we got Emmy a play mat that has lights, music, and rattles hanging from it and about two weeks ago when we first got it she would pass her hand through it a touch the rattle but that was about it, well lately she will push her hand through the rattle and come back and do it a few times in a row almost to shake the rattle. Which is a big thing because maybe she is trying to grab for things and hold and shake them, so we shall see. Ohh one more then Emmy got some new shoes Saturday, black patton leather to wear with her Christmas dress :). These we got not to wear with her braces so her offical shoe size is a 5 1/2 but when she wears her braces she has to wear a 7 1/2 size shoe.


Well that's pretty much what she's doing right now, hopefully soon I'll be able to blog some more good news. :)





She got new black patton leather shoes... ;)





Merry Early Christmas <3 Emerson Louise!


We are not in Italy anymore.

I came across Holland just a few days ago from another mom that has a child that near drowned and it explains what life is like with a special needs child to the tee! Enjoy.

Welcome to Holland


By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
 
Like the mom said this is pretty much our life now but instead we were once in Italy and now detoured to Holland. We were in perfect comfortable happy little Italy and woke up in Holland.  As I read this I was like yes this is exactly how I feel, and I do want to be back in Italy oh so bad. But I have accepted Holland and am now learning my surroundings, where everything is, and loving it all.

I just wanted to share this peice with you all because it touched me so much. Hope you all were able to enjoy it and understand a little bit more what my family and I are going through.

Friday, December 10, 2010

On a Mission!

Yes.... I am on a mission! So like I said I have been finding support through other moms who are going through what I am going through, and I am inspired.

I have been so down that I have let everything slip. I am a very organized, loving, thoughtful, and compasionate person. But no one would have known with the way I have been these last few weeks. I have let my sons school work slip though the cracks. My home is a total wreck. Papers scattered everywhere, clothes on the floor, and NOTHING in it's place. That IS NOT me! I am acting as though Emerson didn't survive this tragic accident and I need to snap out of it and I need to do it NOW before it's too late. And that's just what I am going to do! Because Emerson is a survivor and I need to celebrate her life even more now then before! So birthday and Christmas here I come with full force! I am actually getting excited for Christmas and her birthday for the first time.

I can not thank enough one particular mom who has helped me snap out of it more then she'll EVER know. Just reading her blog changed me and then us writing back and forth changed me even more. Thank you Thank you Thank you and my children Thank you!

So like I said I am on a Mission! First Emerson has been seeing a vision therapist and she showed us all sorts of things to stimulate her vision. I have been thinking about it since the first time she came and even more the second time she came. I never did anything with it just thought about it. Well today I did something about it and got dressed decently for once and headed to Dollar Tree. I bought all sorts of goodies for her. The man at the register must of thought "wow if this is random stuff I don't know what is." lol. I bought a flashlight with three LED lights, red beans, kitchen sink sponges in red, yellow, and blue, a Christmas silver bell, shiny rocks, and a butterfly that blinks all kinds of lights and has music! Random or what. lol. But irroniclly all these things will help stimulate Emerson's vision to come back full force! Yeah for mommy! Now it's time for mommy to implement it in Emmy's everyday activities.

Mommy also found, thanks to my new friend, a website full of toys for special needs children! Boy for the first time I was excited to shop for toys for my baby girl! I found so many neat things to FINALLY tell people what to get Emmy for Chirstmas and her birthday! Also I found some clinically proven non-traditional therapies for Emerson to start. And being that they are non-traditional that means her insurance won't cover it. Oh well where theres a will theres a way. And from this day forward WHATEVER it takes to bring my baby to a full recovery I vow that it will get done!

So now on to finding more about these therapies, how much they cost, talk to family and friends, and start setting up a place for donations and fundraisers to make this all possible for my baby girl. She deserves the change to make a full recovery and I intend that she gets that chance!

So here's to the new me, new life, and new way of thinking. I am coming world ready or not! :)

Thursday, December 9, 2010

A new outlook

For those of you following my blog you know I have been down a lot lately. So I decided to go and find help for myself because if mommy is always sad what good is that for Emmy? It's not. So our special instructor through Early Steps sent me this website for mom's with kids who have near drowned. I looked at a lot of things posted on there and cried a lot but was happy to see a lot of support too. I clicked on a spot that said "Meet the Children" I reluctently clicked on it. First I just scrolled and looked at all the kids names and their sites staring at me as I was debating to click on them or not. Why? You ask well because my husband said I don't want you to look at one child and see that they haven't come that far and give up on Emmy. I will NEVER give up on my baby!! So I bravely clicked on all the little girls first. It was little girls from all over the world and all walks of life. It moved me how far most of the little girls have come. Some not as far as others but still all improved from day one. Which just reinforced my faith and hope for Emerson! And then after viewing all the girls I decided to view the little boys too and same goes not all 100% but all improved from day one and they came from all walks of life.

I also connected closely with a few and decided to fb them and have begun already talking with them and discussing things that we are going through. I am already begining to get into a different midset about my baby. The only thing I wish I had that these women have is community support and continued family and friend support. I am NOT saying I don't have it I guess I am selfishly saying I wish I had more, but that's human I guess we always want more. But I have what I have and am going to work with what I have. I am jumping into this new life and journey with Emerson just in time to begin 2011 as well. I can't be happier about me begining to find myself again in this new life of mine.

However I just feel like I can not completly jump into this because of everything else in my life falling apart. I am not looking for sympthay I am simply doing this blog for me, it helps me to get things written out. Not only do my son, husband, and I have a brand new life to begin living and learning but we also have other struggles thrown at us and it's begining to be too much to handle and frustrating because it is taking my main focus off of Emerson. All I can focus on is what we don't have right now. Among tons of other things falling apart one of the main things is that my husband got laid off from his job just a month after we returned home from the hospital. However one thing I know for sure Joseph & Emerson won't go without, thank God, because we do have some amazing family and friends! I just wish we could give to them too this Christmas!

Emerson is improving a little everyday-infact today she has smiled more then ever before- and as for us as a family we couldn't be better! We are taking this journey on head first and full force! God bless to all!

Tuesday, December 7, 2010

Christmas is coming ready or not.

Well I have been pretty down the last couple of weeks. I am just missing the heck out of my baby girl. Yes I know she is still here and we are very blessed and I am so unbelieveably thankful that she is, but I miss her. I miss her smile, her laugh, her saying mommy, her run, her dancing, her playing with her brother. I just miss HER. With Christmas and her 2nd birthday fastly approaching it's making it hard for me to be merry and bright. But I sure am trying because I do have another child that deserves to have a VERY MERRY CHRISTMAS! Here are three short videos I found of my baby girl, they aren't much as I didn't have a real video camera but here you go.
Above is a video smiply of my dad eating, Joseph cracking up laughing, and Emerson running and saying mommy! <3 Melts my heart!
This above video is Emerson dancing on her bubby's rocking chair. Her daddy is also fussing at her to sit down and what does my precious baby do..... well you saw it, she puts her chin to her shoulder and then begins waving and smiling at us. Again melts my heart!
And the last and final above video is simply of Emerson answering and jibber jabbering while "on" the phone. :)

So now that I have discussed me being sad, let me tell you how Ms. Emerson has been doing. Actually she has been doing WONDERFUL! She is beginging to hold herself up with her arms while holding her head, it's not for long but it's a start.
Emerson is also doing really well with drinking liquids and will soon be getting another swallow study so that we can safely begin giving her liquids at home. Also too Emerson is begining to eat size 3 baby food, the ones with the chunks of food in it, because she's showing some signs of chewing. Right now it's just being done with speech therapy but it's a step in the right direction and we couldn't be happier. Also too Emerson is being put more and more in her stander and doing well with it. She pushes with her feet but that's really all she does in the stander because from not putting weight on her legs for almost 6 months now she has no strength in her legs, so that's what were working on and she is doing well.


Emmy Lou holding her head up while being supported with her arms.

Emmy in her "stander".

Emmy in her "walker".
Okay so Early Steps has started and so far I LOVE all of the therapists. Her PT is Hiliary which is also her PT at Childrens she is pictured with Emmy in her stander and walker but the stander you can see her better. :) The last person we have to meet is her Speech therapist which will come this Thursday. None of the therapist have done too much with Emmy as they are still trying to get to know her and she what she can do. However Hiliary is working her, and I can't thank her enough for that! We love her for it.

Also too today December 7th Emerson was in PT and we all noticed that her cheeks were really red, so we got a thermometer and took her temperture, she had 103.6 and with a urinalysis, chest x-ray, bloodwork, and mucus swab Emerson only has an ear infection. Thank you God! Yes I know ear infections hurt and I am sad that my poor baby has to endure yet another ear infection but am just so thankful that that's all it was and we didn't have to get admitted for RSV or pneumonia.

Last but definitly NOT least, infact to me it is the best I have finally gotten on video my precious baby girl smiling. And please please excuse my annoying voice, but she loves it so I have to do the voice, lol. Enjoy! I do all the time.


November already!

Sorry I am very late in posting this, but I promise I already had this typed and ready to go ages ago. :) Enjoy.

Well this week Emerson has had a very good week. She went to therapy on Tuesday and did so well. They put her on her belly and she was lifting her head and pushing with her hands while on her belly! She has also been doing really well in OT. In OT she is put in a sitting position and pulls herself half way up to a full sitting position. I am so proud of my Emmy Lou!

This week has been a little tough for mommy though. I have been thinking a lot about Christmas and this makes me sad. Why? Well because this year my baby girl will be 2 and the big question I keep getting from family and friends is "what does Emerson want for Christmas this year?" Well I don't know bc if the accident never happened she'd be getting dress up clothes, baby dolls, baby stroller, and all the baby accessories. Play food for her new kitchen she got just one week before the accident. And all sorts of things 2 year old little girls play with. Well now she doesn't really play much, so what DO I get her. This is just so unbelieveable tough for me. But like everything else I will get through it. I just need to continue to pray to God for strength.

Today at therapy Emerson did well too! They stood her up and she pushed a little with her feet and was holding her head up pretty well. Her hands are also open more and she's moving both hands a lot more. She's also moving her feet a lot too. Also too Emerson is up to a half of jar of baby food a day now! YEAH EMMY! Yesterday while she was lieing in bed she was moving her right leg in the motion of riding a bike and picking up her left hand while doing it. (Below is a video) My baby girl continues to improve and I can not tell you how impressed, blessed, and thankful I am!



Looks as though Emerson will begin Early Steps next Monday, which we are super excited about. Early Steps, for those of you who do not know, is therapy provided by the government that comes to your house to provide therapy until the age of 3. So since we have been home we have been driving back and forth to Children's at least twice a week for therapy and then some if she has doctors appointments and what not, so about a month of that and I am already worn out with driving. lol. It takes a lot to get Emmy ready and a lot to get her in and out of the vechile. So having Early Steps I won't have to go to Children's as much, this will be nice especially since it should be getting really cold soon.


So all in all Emerson is improving everyday little by little. And again I say I am so unbelievably blessed and thankful for Emerson and the love, prayers, and support we have. Thank you to everyone! Until next week! :) I hope, if I remember. lol.

Tuesday, November 9, 2010

There's no place like home.

So it's been a while since I have posted but Emerson came home on Friday October 1, 2010. We were so excited to have her home. Emerson seems to be so much more content being at home and I must say it's nice having my entire family home all together.

Saturday Emerson got to see her bubby play football! She did really well being outside for a while, I think she really enjoyed the breeze. For the first week Emerson and I were just trying to figure out a routine and getting the last little things situated with all the outpatient programs we have going on. The following Monday that we were home October 11 Emerson gave us a scare and ended up going back into the hospital. 

So this is what happened. Emerson has a g-tube which allows her to get food through her belly instead of by mouth. While they did that procudure they decided to also give her what's called a fundunession (sp?) which is where they tighten her esophagus around her stomach to prevent her from vomitting which will in turn prevent her from asperating anything into her lungs. Well about two weeks before we left the hospital Emerson began gaging and then vomitting, this was alarming to us and the doctors since she had the procudure and shouldn't be able to be getting anything up. Well they had a upper GI done to see if the nissen was slipped or moved or whatever well the results came back and everything seemed to be ok. So they decided to just send us home to pretty much deal with the situation. Well from the day we got home Emerson was vomitting everyday if not two times a day but on Monday when she vomitted her lips turned purple. So I became alarmed and called my physician on call and he told us to bring her to the ER immediately and have her re-checked again bc she shouldn't be able to vomitt and plus her lips were purple. While in the ER she vomitted again so the ER physician was able to see, I wasn't crazy. lol. So she decided to admit Emerson and have some more test run. The next day Emerson had a GI study done and the results came back just as the upper GI. No slip nissen; nothing, everything looked great. So they decided to put her on Nexium which is an acid reflux medication and also do an acid reflux test over night. Here is Emmy while the test was going on.



No offical results had come back when Thursday the Dr. came in and said since she has been being treated with acid reflux medication and hasn't been vomitting were going to go ahead and send her home and assume that the vomitting was from reflux. The resluts have since come back and it is indeed acid reflux. So thank goodness that's all it is.


So we were released on October 14th and since we have been home for the second time Emerson has been outside swinging with her bubby.

Met her new cousin Luke and visited with all her other cousins- Bella, Addy, & David






Had some play time with mommy too!
Oh! And we finally got a glimpse of her smile!!! :)



Our last week!

So I was going through trying to update Emmy's blog and this was our last week at Children's, yes long overdue, sorry! :) But please enjoy.

Well it's been about one week since I last posted but Emerson is getting ready to go home. I have been so busy since last Friday. I went home started polishing all her furniture, cleaning sheets, vaccuming, lysoling EVERYTHING, organizing and all. Getting together her medicines for home, getting all her machines together and learning how to use them, and so much more. So I have been busy.

Emerson has continued to do so well in her thearpies this week no real big improvements. She is still working on her head control and swallowing well and has good range of motion in all extremeties. Emerson had her first car ride in three months and her second outting to her Uncle Richard and Aunt Fara's house. She also got to meet her cousin Luke for the first time! :) We also watched the Saints game and she was too adorable in her pink Saints jersey. Here are some pictures of what she was doing the last two weeks in thearpy and some pictures to go with what she was doing in the last post. 


Mrs. Lori and Emmy in her walker

Emmy at OT in her bean bag swing


Playing in the ball pit :)


In the ball pit with Mrs. Leslie!


Emerson's first car ride in three months!


Emerson's first outting to her Uncle's House

These are the three women that have brought Emerson so far and I can not thank them enough! This is Verlencia Emerson's speech therapist! She has helped Emerson start eating baby food by mouth, keep her speaking valve on all day, start making G and C noises, and begining to drink juice again. We love Mrs. Verlencia and honestly can not thank her enough! :) 
Next is Mrs. Leslie Emerson's Occupational thearapist. She has done so much for Emerson as well. She has gotten her hands to not be so tight anymore, has gotten her to begin playing with toys particually one toy, the ball! lol. We love Mrs. Leslie too!
Mrs. Lori & Emmy Lou
And last but most def. NOT least Mrs. Lori Emerson's physical therapist. She has been the MOST amazing. She has gotten Emerson's feet back to where they should be, she has gotten her to hold her head up, begin walking in her stander, and so much more. But honestly we have been blessed with the most amazing theripists! I couldn't have dreamed of anyone better to help my Emmy.
                                                                                                                                                                                                                                                                   
Here are some pictures of some more very important and special people we have met during our three month stay at Children's.








We love everyone at Children's and are sad to leave but will be so excited to be home too!

Thursday, September 23, 2010

I give God all the praise and Glory!

So last Thursday was the begining talk about Emerson possibly getting her trach removed before we go home. So the first step was to give her a smaller trach so we did and she is doing wonderful with it a week later.

Friday September 17th she was put into a walker and did really well with it. She is picking up her right leg well and trying with her left. She is also able to support herself with her left leg and is trying with her right but it buckles at her knee. But overall she is doing really well with trying to walk. Emerson also got in a beanbag swing and was okay with it. lol. She also got in a ball pit with Mrs. Leslie and was not happy at first but really started to enjoy it after a little bit. 

This week (9/20-9/23) Emerson is still doing well with drinking out of a cup and is doing soooo amazing at trying to hold her head up. She has so much more control with bringing her head center and back and front and is holding it up in the center much longer she even sometimes moves her head while still keeping control of it. :) Emerson also got put in this neat little contraption, it's a treadmill that she walks on but is put in a harness to help her hold herself up. She did okay with that. Emerson also made it in the bulletin board at the hospital, proud mommy! This week they have also been messing a lot with her meds and feeds to get them right for when we go home. She was completly off of her propanolol but on Tuesday night we realized that she had a bladder infection which caused her heart rate to go up which is typical when someones in pain. So they put her back on the propanolol once a day which is to help regulate her bp, body temp, and heart rate. Emerson was also given neurotin for her seizures but after a couple of days it wasn't really working too well so just Tuesday they added keppra (sp?) which is to help her with seizures, So far with a full days dose in her I do not see much a difference and the Dr. said that it takes a couple of days to really see a difference. So we'll see. I just pray that she stops having the seizures completly.

Tonight Thursday September 23 Emerson gave us a scare though, she stopped breathing on three seperate occasions. It was very scary, my hands and legs never shaked so much and my mom says that I was white as a ghost. What happened was that Emerson gets a breathing treatment and her trach suctioned every four hours and her last treatment and suction was at 12 noon and she was due for one at 4 pm but she didn't sound junky like she needed to be suctioned so we went ahead and went to the thearpy renunion party they had for old and new thearpy patients. We got back to our room Emerson fell asleep and respirtory was on their way to do what they needed to do when her apnea monitor read zero for her respiration and one hundred and something for her heart rate (I didn't look too closely). So I yelled for the nurses and she wasn't blue or anything but was gasping for air when they came in and this happened two other times her monitor would go off her belly wasn't moving and then she'd gasp for air. So they bagged her and suctioned her, gave her her breathing treatment, and all the while she was still sleeping, so we woke her up, suctioned her, did CPT on her, and suctioned her again. And she seemed fine after that. The respirtory thearpist said that she had a lot of thick mucus and got a mucus plug out when she suctioned her so that is why they believe that it was just from that. Also too because they did a blood gas on her and it was fine and her xray was fine as well. The Dr. did however tell me that when you have a plug your carbon dioxide that you breath in can make you "intoxicated" just like alochol and can mess with your brain with how you breath. So yes this all happened because she had a plug.

On a better note this week Emerson has been able to tolerate her speaking valve ALL DAY! except for when she's sleeping. This is another big step to getting her trach out, so Emerson won't have her trach forever. Also too different things I have been noticing is that she moves her legs and arms a lot more. She can wiggle her body too! She gets goosebumps now, she has tears now when she's really crying, and her chin chatters when she's cold. I know these sound like normal simple things, but I haven't seen my baby do this in three months and slowly everyday God is blessing her and she's gaining little things back. Gosh I can't say enough how blessed I am and how thankful I am for God's work on my baby! :)

I will post pictures sometime this weekend of all of her progress! :) Please contine to P.U.S.H for Emerson (P.ray U.ntil S.he's H.ealed)

Thursday, September 16, 2010

I believe God!

So I said in the previous post that I would post pictures of her mic-key button so here it is. ------>

Okay so on Monday Emerson was completly dropped off of her zantac which was used to prevent her from getting ulcers in her stomach. She was also dropped to 2x's a day dose of her propanolol which is used to control her blood pressure, she was also dropped to 1.2 mg of vallium and she was at 2.0 mg. Yay!
In speech Emerson was still swallowing well and pushing the big stop light button when asked to. In physical thearpy she's holding up her head really well with no support whatsoever! So can bring it from the front to the center but not quite yet from back to the center, but she sure is trying! :) In occupational since she is doing so well in speech with the button Leslie decided to try getting her to push this globe looking ball, knocking down a rain maker, and pushing this turny thing when asked, and she did. So overall Monday was a terrific day! 

So Tuesday Emerson began another thearpy, music. She did really well in it and loves to hear singing and music. Emerson really enjoying trying to move her heavy feet with the bells on them! :)
Wednesday I finally got the EEG results and it shows that she has seizures. It is a bummer to hear but at least they only last for one to two seconds, yes seconds and only her eyes flutter up and down. She is on some medicine called neurotin to help control them. She can grow out of these seizures which is what I am praying for!

Thursday Emerson went on her first outting outside the hospital! It was big for her and I. I was a nervous wreck, but it all went very smooth and she loved it! As soon as we walked in and she heard/saw the waterfall and the BIG HUGE shark thing above her, her eyes got big and she moved BOTH her arms rapidly! It was quite a site to see! :) She also loved the peguins! Here are a few pictures of the outing, didn't get any really good ones nor much of her or me, my mom, and the two hospital workers who came with us only because I was such a wreck making sure she was ok. Next outting I PROMISE i'll get plenty more pictures. :)

Also too Emerson got her first sip of apple juice today and did phenomenal! No aspirating, no coughing and had a nice seal around her cup! :) GEAUX EMMY!