Wednesday, January 26, 2011

Eventful Week.

So as you all know Emerson's blog auction is now open for viewing only. The acutally auction will begin Tuesday February 1st at 8pm central standard time and end Monday February 7th at 7pm central standard time. So go ahead and check it out at

Okay so we had a pulmonologist appointment on Monday January 24th. All went very well. In fact we are scheduled for April for possible decanualtion. Decanulation is removal of the trach. WooHoo. One less thing to worry about plus I think it's more of a bother then help for her now.

Doctor says her lungs sound wonderful and being that she hasn't gotten sick during this winter season is great news but he does want to continue to be concious and wait until April, and that's quite alright with me.

We also had Early Steps with Hiliary who is also Emerson's PT at Children's and she commented on how Emerson is helping more and more with lifting herself up! She also said that Emerson is progressing pretty steadily. Fantastic!
On Monday when we got home it was raining and our yard was muddy so I ran in with some groceries and was coming back out to help my husband with Emerson when I hear him scream for me. My heart sank because it wasn't a I dropped something can you get it help it was a scream that I screamed on that very horrible day in June. Emerson's g-tube was just dangeling. Oh my goodness, I paniced. I ran in her room and grabbed the syringe they gave me to inflate and deflate the balloon that's on the inside incase something like this happens. And they showed me how to put it back and it looked really simple, ha not on Monday it wasn't. So I deflated the baloon and tried pushing it in but everytime I would she was cry, push her legs out, and move her hands towards me a push. There was no way I was getting it in and all I could think was I am sitting here trying to put it in and it won't go and were just wasting time for the hole to close and then she'll need surgury. And I didn't want her to have surgury if it wasn't necessary so we scooped her up and off to the ER we went. We went to St. Charles since it was the closest in hopes that they knew how to put a g-tube back in. As soon as we walked in they knew who we were and the charge nurse stopped us and said "don't I know ya'll" and we said "probably, our daughter near drowned on June," and he finished our sentence "28th. I'll never forget that day. Come on back." And then he proceeds to tell us "You know I am shocked to see ya'll." so we asked why? and he said "Someone came in and told the whole hospital that Emerson was brain dead and on life support and ya'll decided to pull the plug." A little taken back I replied "Nope she's here alive and well." And he said "Yeah she looks great, I can't believe it. You know just when I want to give up on nursing someone comes in a reminds me why I do it." 
I am really glad we were able to brighten his day. We were actually able to brighten a few people's day because this was the first time back to the hospital since June and several other nurses cames in so happy to see how well Emerson was doing and gave us so many words of encougement. So anyway Dr. Giueffre was able to put Emerson's g-tube back in with no problem. 

Tuesday Emerson had thearapy at Children's and she did some treadmill work with Hiliary. Emerson was not too much of a happy camper. lol. She did well but she fussed the whole time and kept plopping her head down as if she were pouting. It's okay because we got weight through her legs and she walked about 1/10th of a mile. Works for me!! Go Emmy Go!

I couldn't be more proud of Emerson with all that she has done. And I know with God she is going to do so much more. And with the help of family, friends, and strangers were going to reach our goal and head to California in June. :) And I can't wait.

Oh but one more thing.... No pictures lately because my computer is still being fixed, Oh and now my iphone is broken. Lets just say maaaybe all electronics should be kept away from me. lol.

Anyway be sure to check out Emerson's auction site at We have so many low starting bid beautiful items. Plus we have more donations coming in daily. So continue to check it out. Bidding starting on Tuesday February 1st at 8pm Central Time. Enjoy. And thanks to all donors, bidders, family, friends, and strangers for you thoughts, prayers, love, and support.

Tuesday, January 25, 2011

Real Quick

Real quick I just wanted to let everyone know that the auction is now open to everyone for viewing only. The bidding will not begin until next week, but please feel free to view all the great things we have.

Friday, January 21, 2011

Busy, busy bee!

Well I have been super busy setting up the site for the blogction and posting all the donations. And I must say we are extremely blessed! From the help of family, friends, and strangers they all have exceeded my expectations on the amount of donations I would recieve. I can not thank everyone enough for all they have done so far. A big huge gigantic thanks goes out to Shauna who gave me the idea for this blogction and has helped me et up all the "behind the scenes" work. I truly could not have done this without her.

Now I am stoked about this auction, only bad thing is I have so much great stuff that I want to bid on it myself. But that wouldn't help us out at all. lol.

So I haven't just been a busy busy bee with the blog but I have been busy planning my sons 6th birthday too. I can't believe he'll be six, my big boy. He's so mature for his age but with what he's been through with his sister, it's no wonder.

Another thing that is kind of holding me back and got me a late start posting all the donations is my computer. Well you see first the dang charger was fickle. I had to wiggle nd jiggle it just the right way for it to charge and put duck tape on it to stay that way. haha. Then my computer got a virus and just went completly kaput! But thanks yet again to a great friend Carm's husband is in the works of fixing my computer. He, with lots of struggle, was final able to save all of my pictures which was my biggest concern and he had to wipe my computer clean to factory setting. No biggie I got my pictures an my computer. Hopefully he'll be done soon. I can not thank him enough! So how am I writing this blog my iPhone. I had no clue I could blog from here.

Now Emerson. She has been doing really well with rolling to her side very consistintly and can roll onto her tummy and from her side to her back but it's not quite consistant yet BUT she's almost there! Go Emmy Go! Her head control is getting better too. We've also found new wys for her to smile. I know there just smiles when stimulated but hey it's a smile and I am taking it and rejoicing! She's still doing very well with eating too. And her legs are great! She loves to push up on them and stand with assistant. But I keep trying to tell her she's not going to be able to walk unless she gets complete head control, so we shall see becase she is pretty determined to walk without that head control! Stubborn like her daddy
I mean mommy :) Emerson had another session of Hippo Therapy and did pretty well and bubby even go to ride. He enjoyed that very much since he feels left out sometimes. Mommy is getting more and more used to the wheelchair. We have gone several places in it LOUD and PROUD! ;) Emerson's vision seems to be improving more too. I spoke with a friend ad she explined CVI (Cortial Vision Impairment) like this she sees like she's looking through a peice of Swiss cheese. I love that analogy. Also as her brain gets better so will her sight because there's nothing really wrong with it it's just the brain damage causing problems.

Now Emerson is steadly trucking along with improvements but her stupid seizures keep getting in the way. I swear there pesky little boogers. They are better then before with this new medication she's been on for a month now but there not gone and they get in the way of her trying to do things. Example when she's begining to roll over shell get one and boom it's done and she has to start all over. Same goes when she's holding her head up she'll be doing that for a bit and bam a seizure comes and messes everything up. UGH! They bite. But we have a visit scheduled for Dr. Tilton her neurologist on Feb 2 and I hope we can figure something out to rid these boogers but not make her sleep all the time. It's a tough balance. But we shall pray and God will take care of it, he always has and always will.

And finally Emerson went for her first dentist visit and I was worried because bubby has not so good teeth even though he brushes twice a day. I think heiridity (sp?) has something to do with it. Anyway Dr. Shaw says Emerson has beautiful teeth and no cavities! WooHoo! She also did really well with her touching her mouth. She usually hates when someone touches her mouth. She cried a little bit but mommy was holding her and loving on her which I am sure made the difference! :) So all in all Emerson is progressing and that's all I could ever ask for! Thank you God for answering my prayers time and time again. Even though our timelines are different your timeline always ends up making sense. "Be Joyful always!"

Monday, January 10, 2011


Decisions. Decisions. Those are hard to make sometimes. But I finally researched and decided on what we are doing for our first fundraiser.

We will be having an auction style blog auctioning off some really great things. Like homemade baked goods, handmade items, certificates for services, gift cards, children's clothing, jewerly, art and more.

If there is anything anyone would be willing to donate please shoot me an email and let me know Whatever you are willing to donate you will be responsible for shipping the product to the highest bidder. Or if you know someone who would be willing to donate please forward my email address. Thanks in advance for all support.

Also too please join us for the auction to see all the great things we will have. The auction will be from February 6-12. Starting at 6:00pm central standard time. The blog site is I haven't listed the items quite yet as I am just getting pictures of all the items for auction. The blog will be set up completly very soon. 

Ok. On to Emerson. Since last week she hasn't had any big improvements but she is doing great on strengthening her legs. Today daddy was playing with her and she stood up on the sofa! And in the picture you can see the indention in the sofa showing how much pressure she is putting on her legs.  

Emerson is still rolling to her side unassisted and her therapists have all commented on how great her elbows are. There is no more pulling! YAY! She also still has full range in her legs! Go Emmy.

Also I am realized any boucing or moving my Emmy loves because she smiles soooo big!!! I was changing her and she was just a smiling away and I picked her up to give her to my mom and I bounced her in my arms and she was smiling even bigger! It's such an amazing feeling when I see my baby girl smile!

This month is filled with Dr's appointments and tomorrow is one of many. We go see our pulmonologist. Hopefully it'll be a good one. Also tomorrow we have therapy at Children's and we are going to put her on the treadmill to see how she does. She hasn't been on it since she was in the hospital in August.

So please continue to pray for Emerson and that we raise enough money to send her to intense therapy! Thanks to everyone for our thoughts, prayers, love and support!

Friday, January 7, 2011


Here are some poem I came across that just really touched me. Enjoy.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over Earth Selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew." "Forrest, Marjorie, daughter. Patron Saint, Celia." "Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel." "But does she have the patience?" asks the angel. "I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it." "I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy." "But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side." "And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."


You often pity me, I see it in your eyes. You wonder how much I am aware of…I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the worlds standards, or great strides in development that you can credit yourself with . I do not give you understanding as you know it…what I give you is more valuable. I give you instead opportunities. Opportunities to discover the depth of your character, not mine, the depth of your love, your commitment, your patience, your abilities. The opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. Most of all I teach you hope and faith.

Wednesday, January 5, 2011

Two years old.

First let me start off by saying that yesterday Tuesday we went to Children's for therapy and as soon as we got to PT Hilary got out the walker to see how Emmy would do.

Let's back track a little, she has been testing Emmy every week either in the stander or walker to see how Emmy would do in them to see which would benefit her more to have at the house so she can begin the ordering process since it takes about 6-8 weeks to approve and get. The last couple of weeks she has been doing ok in both no big oohhh moments.

UNTIL yesterday!!! As soon as Hilary took her out of her chair she held her under her arm pits and Emmy was standing, yes standing. She was pushing through her legs and was holding herself up of course with the help of Hilary supporting her upper body, but hey that's a HUGE step. And of course I didn't get a picture but she did it again today at her peditrican's office so I am sure this is not the end of us seeing that and I will be sure to get a picture soon.

Also too beside standing like that, when she was put in the walker she was lifting one leg at a time and stepping down. It was awesome to see! The first time she was ever put in a walker which was while we were still in the hospital she would try and lift her leg but it was as though she had bricks attached to them because she could barely lift them, and her right leg would buckle when she would stand on it and lift her left leg. But yesterday her right leg hardly ever buckled. It was supporting her so good!! I was so impressed and proud of my Emerson. I truly hope this continues.

Ok. So my big girl is already 2 years old, and today was her two year old check up along with making up of her 18 month shots. Well as I was signing us in the lady handed me the paper to fill out about how your child is progressing. As soon as I saw it my palms got sweaty and my heart started to race. And I told the lady while looking at Emerson "She really can't do what's on that paper, do I have to fill it out?" And of course the nurse told me yes and once you answer no to three questions you don't have to fill out the rest. Boy was I bummed. So with the clipboard in one hand and Emerson's chair in the other I pushed her to a spot, sat down, and took a deep breath. I read the first sentence.....1. Your child should be able to say two word sentences such as "want drink", "get down", etc. Aaannndddd my eyes filled up with tears and they just poured over the page and I could barely read the next question, that I already knew was a no but I had to tourture myself and read it. lol. So as I am wiping and sniffling I read the next question......2. point to the animals and see if your child knows the names to the not just the sound they make. Boy if Emmy made the sounds of these animals I would be extatic. But again I marked another no. And well the third question I don't even remember I just threw it at my husband and told him to circle no and put her name on the top. *sigh*

I really don't know why that got to me so much today. I mean lately I have been so strong and so excited to see all the new things she has been doing. In fact my husband and I were watching her roll to her side and try very hard to make it to her belly yesterday and I turned to him and said you know these milestones she's reaching seem so much more exciting then the first time around. I mean we were hooting and hollaring at how well she was doing, so why did that damn paper get to me? I guess because although I am so blessed and thankful that Emerson is here and doing so well, I still wish this never happened and that she was the perfect little two year old she would have been. I will eventually learn to cope with it, never will I "get over it" but I will learn to cope with it one day.

Okay so on to how the doctors appointment went. First they weighed her and she is 29lbs, then they measured her and she is 35 inches. She's gained 9lbs in 6 months. :) Then the mean 'ol nurse came in to prick her foot for her iron and lead levels. Well no lead...woohoo. lol. And her iron is awesome, in fact it's pretty high for her age but the doctor was pleased. Then the doctor checked her out. He commented on how great her feet looked, her back is perfect, her belly is fine, her lungs sound great, her g-tube site is irritated but to be expected and no infection, her arms looked great and not much pull, her hands were pretty loose except her left hand was a little more stiff then the right but like we discussed it was her "bad" hand so the extra stiffness is expected, and her ears looked but she produces a lot of wax (she gets from her dad) lol. So I am going to toot my horn here a bit because yes a lot of the therapist have helped get Emmy to where she is but it's mommy & daddy that are keeping their hard work the way it should be. :) And Dr. Kappel commented on that. Yay Emmy, Mommy, and Daddy!

So since I had such a rough time with that paper at the doctors office I posted on fb and had a few comments from friends that are going through the same thing and with taking some of their advice I am going to take a look back because Emerson has made leaps and bounds. And just for MY sake I want to list them. It's hard to see improvements when your the one around all the time. So here it goes.......

1. no more 20-30 degree curve in spine.
2. no more "ballerina feet".
3. looser hands.
4. arms move.
5. legs move.
6. legs not in "frog" position as much.
7. left arm relaxed more.
8. rolling to each side and trying to roll back to her back.
9. taking steps in her walker.
10. A LOT more head control.
11. able to sit up unassisted for about 10 seconds (before it was none at all)
12. able to actually sit. (in hospital we had no hip rotation which prevented us from sitting)
13. following lights more
14. trying to focus in or people and toys.

That truly is a lot of improving and I knew that deep down inside but I still miss my Emerson and hope and pray to get her back one day. Please don't forget to
PUSH for Emerson!

Sunday, January 2, 2011


Ok so it's been two weeks since my last post and boy have we been busy. Let me see if I can back track at all.

So I have been nervous about Christmas and Emerson's 2nd birthday coming but it has come and gone and I couldn't be happier. Yes it was a little sad to think of all the things Emerson should be doing but if I thought about that all the time I would just be down in the dumps all the time and that would be no good. So I took Christmas and her birthday by the horns and enjoyed EVERY single minute of it as we celebrated Emerson's second year here on earth and the birth of Christ.

Well Joseph got an early Christmas present and got tickets to the Hornets game so we went and had a blast. The Hornets even scored 100 points so we got a free chicken wrap from Popeyes which I think was the highlight of my son's night. lol. That's Joseph for ya.

Emerson got soooo much for Christmas and her birthday...... She got a bean bag which is just awesome! When we put her in it, her legs were hitting the floor and her shoes have squeekies in them and when she put pressure through her legs they were squeeking away :) I jumped up looked at her and was like "oh that was Emmy" lol :)

Emmy also got A LOT of really cute clothes, jammies, and bows. She got some really cool light up toys, a "O" ring ball, a peanut ball (to use for therapy--Thanks Nan!), a pillow pet, jewerly; in fact her first set of pearls :), light up star toy, and so much more I can't even remember.

Joseph had a fantastic Christmas as well he made out like a bandit! :)

As for therapy most of the therapist cancelled due to Christmas and New Years but Hilary her PT has been coming faithfully! Not too much has changed in her therapy Emerson is still making small progress but nothing major. Emerson did Hippo Therapy once but it was closed for two weeks because of the holidays and we intend to return on Jan 8th.

One good thing we just found was a new tickle spot on Emmy! The more smiles the better for me! Also too I always put Emmy on her play mat and she likes it but the other week she just seemed so amazed by it. Also she is more relaxed. Now to most normal moms having her arm down at her side and her legs down isn't a big accomplishment but to me and other moms like me it is HUGE! Emmy has had her legs in a frog like position pretty much since we left the hospital. It wasn't constant but anytime her tone would act up her legs would push into that frog position. Well lately she hasn't been and her left arm has been coming center more and relaxed at her side more. Usually it's up in an "L" position and she moves it back and forth almost in the stroke of a hammer. But again like I said lately it's been relaxed and she seems like she's trying to control her movement with it! She's also bringing her hand center more which is excellent but she rubbing and tugging on her trach more. Uh Oh, more careful watching of her that's all. Anyway this improvement is exciting! ^ above see the one not relaxed right arm and the one relaxed left arm :)))) and her legs are down and not in froggy position!!!

Another thing this new year is bringing us is more non-conventional therapies for Emerson. I have been researching my little butt off trying to decide what therapies would benefit Emerson with the help of her Neurologist and our hospital PT Lori. So we have been looking into going to the NAPA center in Los Angles California. It is an intensive therapy that is 3 hours a day for 5 days a week for 3 weeks. It includes therapies like suit therapy, sensory integration, treadmill therapy, massage therapy, electrical muscle stimulation, gait training, alternative chiropractic therapy, auditory/vestibular therapy, and more. If you or someone you know is interested in NAPA center check it out at I have looked into our insurance covering it and unfortunetly they do not which means I will need to come up with about $3,000-$5,000 for Emerson to do this. I am now looking into starting up a fundrasier to get the funds, hopefully we can raise enough money to get Emerson there before May.

 Crafty? I never thought I was but I am. I found on a friends blog a sensory board and it got me thinking Emmy needs one so that's just what I did. I went out and bought all sorts of stuff with different textures to put on it. Ok here's the breakdown...... The board is just a clip board and it's covered in duck tape that was zebra print, cute, I know!!! :))) And at the tope left corner is just a compact mirror. Next to that are some colored different sized fuzzy balls. Next to that is some fuzzy colored pipe cleaner. Under the mirror is a gold birthday horn thing. Then theres a slinky, a peice of sand paper, and a baloon filled with corn starch. Around the board ie, the blue flower the pink heart, and the pink butterfly are gooey sticky things (kinda like those sticky hands you get in the gumball machine). And finally there's her name with stickers that are hot pink and have glitter on them which make for a fun feel. I was so proud of myself when I made this, I honestly didn't think I would do this great of a job. But I did and it's sassy and adorable just like my Emerson Louise! <3

Oh and I have more ideas that I intend to do with my crafty side. It's just begining. lol.

So all in all this new year I hope for many blessings for my family and everyone else. We had a rough 2010 but still had things to be grateful for and we are very grateful for them. So 2011 can only be better right? I sure hope so. "Be joyful always!" And have a
Happy Blessed New Year!