Emotional Week

This week has been a busy emotional week for me. First with Emerson being sick and then me being so nervous for such a simple outpatient procudure that she was having. First it was scheduled for Tuesday but since she was sick they cancelled. And they didn't have any other appointments until May. I was a little upset, but they called 10 minutes later and were able to get us in on Friday for noon because there was a cancellation. Thank goodness because waiting until May is for the birds.

So Friday came and we followed all instuctions and only gave Emerson her million medications with a 30 cc flush at 8 am and headed to Children's at 10:45 am. With all the Huey P Long taffic you can never leave too early. We got there around 11:45 am and were seen right away. Emerson was starving by this point because she hadn't eaten since 8 pm the night before. We got to the back where they began going over what they were going to use to sedate her and all the precautions. While the doctor was talking Emerson bit her finger, again. This was not the first time she's bitten it Thursday, the day before, was actually the first time. Thursday when she bit it she cryed a big whale of a cry immediatly with tears pouring down her face and two teeth marks on her right hand pointer finger. My mom and I looked at her with a smile because a down pour of tears we have never seen before and because all the doctors said that she can't feel anything and if she does it's delayed. HA! I got news for them she can most definitly feel and it's for sure not delayed. lol. So anyway when she bit her finger at Children's Britten and I just looked at each other like again? And I looked back to pick her up and comfort her and notice a pool of blood dripping from her finger. Yes a pool of blood. I kid you not. The nurse and doctor didn't seemed bothered by it at all but Britten and I freaked out a bit. I even asked the nurse to take a look at it because the way she bit it she left about four indivdual teeth marks. It was bad. My poor baby. Well I cleaned up her booboo and put a bandaid on it and sat back down to talk to the doctor while holding and comforting Emerson. Dr. Levine asked if she had done this before and I told him yes and he said it's typical 2 year old action. It's self stimulation. He said ever seen a 2 year old hit, bit, and slap themselves. And I said yes. He said that's all self stimulation. So I took that and ran with it. I am taking that as a good thing, even though I really don't think she is doing it on purpose. I think it's when she's hungry she puts her fist in her mouth and starts sucking and biting and latley just this week she's been biting more then sucking and is biting a little too hard and I don't think she quite knows how to let go. Hopefully this gets out of her system soon. Anyway back to the procudure. After all the precautions were discussed Dr. Levine decided to sedate her with Chloral via g-tube instead of starting an IV and giving meds through that. Thank goodness, I thought that was a fantastic idea. So the nurse came in and gave her a niiicceee little dose of the sedation medication and brought me a rocker to rock my sweet princess to sleep. So we rocked and about 10 minutes later she was out and 2 minutes after that the tech came in to set up the equipment for the procudure and told me I could go take my time, eat, and relax because the procudure would take 2 hours. So I gave her lots of kisses and headed to the caferteria for lunch. As I got downstairs I get a phone call from Joseph's principal that it was a half day at school and no one was home and he was dropped of at aftercare. GREAT! I totally forgot about my son and his half a day at school. Mother of the year award? NOT! So Nanny Shea came to the rescue and picked him up from school and brought him to her house to play. About an 1 hour passed and we headed back to the 2nd floor of Children's (red elevators lol) and asked if they were done, they were not so we sat out in the waiting room waiting for them to come get us. About 20 minutes later or less they came and got us and we walked to the back as Emmy was just starting to wake up. The nurse gave her some pedisure via g-tube so she wouldn't get sick from the sedation and we were free to go. Simple, right! I don't know what I was so nervous for. Oh well I guess it's just being a mommy you worry for everything your kids go through. Emerson was waking from the sedation a bit but was still very droggy. We headed to pick bubby up from Nanny's and headed home. We should get the results from the test sometime next week. She was having what's called a triple evoked potential done. The best way I can describe it is they hook her up to an EEG and test her vision, hearing, and touch. The reason she needed to be sedated is because they send low voltage shocks to parts of her body to see if the signal goes to her brain. They also flash different types of lights and things in front of her eyes and see if the signal goes to her brain more importantly if the optic nerve is sending the signal back to her brain for her to get vision and third they send different sound frequencys and see if a signal goes to her brain. And that's how they'll determine if she can hear, see, and feel without her being awake.

Another thing that I have been doing this week is researching stem cells. So far what I have read it's a good thing for Emerson. It looks like it's going to cost $10,000-$20,000. And that scares me because I don't have that kind of money nor do I know if we will ever be able to raise that kind of money. Plus I stress over wanting to do everything possible for her asap because the doctors say the sooner the better for her. Well it's not something I can stress over right now, if that's the path God wants me to take to heal Emerson he will find a way and make it happen for her, I will just leave it all in his hands his knows best what to do with it all.

Emotional week, you can say that again. I don't know if it's been because of the stress and the fact that my baby boy will be 6 on Monday March 21st or what. But I have been having my moments. Still missing my Emerson and wishing so badly that life was the way it was a year ago. I would give anything to have her back. I guess the emotions were brought on by a dream I had. I had a dream that Emerson was in my bed with me and I was hugging and kissing on her like I always used to do and like any typical 18  month old she wanted to get away and down to go play not be still. So she wiggled off the bed and I grabbed her by her hands and wouldn't let her go I just kept kissing and tickling her, but she eventually got away and took off running they way she always did with that right hand up by her chest and the left just dangling and she'd wobble off. I woke up from that dream as though it had just happened I had the biggest smile on my face looked at the clock and though "oooo Emerson should be up soon" And waited about  minutes waiting to hear her yell for mommy. When I didn't I got up saw that stupid apnea monitor starring me in the face and abrutly got snapped back into my current life. Wow life can be so cruel. I was heartbroken. But I turned off her monitor and picked my baby girl up put her in the bed with me and kissed on her and played her little radio with her. I truly enjoyed it but I wish she was able to respond back to me more. I know that's what her brother and cousins miss the most as do I. We miss that reaction back. The laughing, smiling, or "No!' response. Everyone keeps saying it'll get better and I sure hope so. If that emotional day wasn't enough I was cleaning and organizing the kids room today and went through a box I had tucked to the side hidden away in Emerson's closet and low and behold found her bathing suit and old onesies I couldn't part with. I sat there smelling them and crying. I miss her so much it hurts. Then again if that's not enough. With all this party planning going on for bubby's big 6th birthday and viewing others little girls birthdays going on I can't help but wonder and think about Emerson's future birthdays. And sadly enough will she be here for them all. With the experience I've had you can't take any day for granted because even though their your kids it could be their last day. I want to play those spa partys, tea partys, and every other little girl party you can plan that you just can't plan for a little boy. Again my heart hurts so bad!!! Anyway it just breaks my heart some people have there princesses to spend time with love on, kiss, and teach and they take it all for granted. It pisses me off to be honest with you that the precious time in my daughters life was pretty much taken from me. I hate it. All I can do is pray to God that I am making the right decision for her and that with the help from medical professionals God will heal her 100%. But I have to admit I stress out so much and worry if I am making the right decisions for her. Im her mom but I don't know what non-convential therapy will heal her or if any at all will. It's a scary lonely thing to go through.

Lord, I pray that I am making all the right decisions for Emerson and that you place your hand on her and heal her.  Lord just lead me in the right direction. In Jesus name! Amen!

Please continue to P.ray U.ntil S.he's H.ealed! Many Blessings to all. Be Joyful Always!

Sick babies

Mardi Gras holidays started for us on March 5 but on March 3 big brother Britten was sick with a sore throat and vomitting. Great! Just when I thought I was out of the clear with either of my babies getting sick this winter. Haven't we been in the hospital enough this past year. Guess the bug didn't think so. But thankfully it wasn't anything serious and didn't last long at all.


During the holidays I cleaned Emerson's ear and made it bleed and it had been bleeding for about three days then on Saturday she was breathing really funny and was very larthergic. So I decided to bring her to the ER on Sunday. She was tested for flu, RSV, and phenomona but has none. Only a cold and a double ear infection. But apparently I also hit her ear drum and that's what caused the bleeding but the dr didn't seem to concerned about it. So she is on antibotics and hopefully this funk will pass soon.


This week I have been on a pretty emotional rollercoaster. I just feel so helpless. Am I choosing the right therapies for Emerson, am I doing them quick enough, are we doing too much, which one should we do next. It's just so much to think and worry about. I worry if the possible decanulation will happen or will she have her trach forever. I worry about test and dr appointments coming up because I am tired of hearing negitative things. I guess I am just a worry wart. On top of all that our home situation isn't getting any better. Living with my parents and trying to keep our routine and displine in tact was difficult before the accident but since the accident and all the "stuff" Emerson needs and has accumilated is tougher. My mom's house is only so big and it's getting smaller by the minute. Hopefully we'll get our own house soon so my kids will have room to play, sleep, and Emmy will have room for therapy. Until then we will continue working with what we have. Prayers that this situation gets better soon!

Right now we are sitting outside enjoying this beautiful weather! It's not too cold and not too hot. I love it. The time change has thrown me off a lot but today I am so glad it happened because Emmy is able to spend some time outside while the weather is just perfect for her. Daddy and bubby are playing basketball while mommy and Emmy are on a blanket playing. Life can't get much better then this! We are so blessed. My goal is to not worry about consume myself with all Emerson needs and just take it day by day and enjoy life.

 

Content

Finally, things have started to slow down. This past Saturday Dwan put together a Jambalaya Fundraiser for Emerson and the turn out was phenomenal. We raised $1800 not including what was raised from the vendors. So it was a great turn out. Thanks to everyone that helped put it together and all that attended!

Emerson has been doing well in therapy she has been responding more to us too. The other day when I got back from playing Bonco with a bunch of girlfriends I was super excited because I won most wins and was talking to Emmy about it and she turned to me and smirked! It was so nice to see. She has been smiling a lot but always with stimulation this time no stimulation needed just happy talking! Then today at therapy her old speech therapist saw her and was talking to her and again Emmy turned to her and smiled! Mrs. Verlencia was super excited, as was I.

As far as therapy goes she's doing well. When Emmy is in her  "walker" she usually has the head rest and uses it as a crutch and leaves her head rested on it for most of the time but last week Hilary decided to take the head rest off to see how she would do, and she did better realized that she didn't have the head rest to lay her head on and held her head up almost the whole time! So this week we did the same, no head rest and she did great again! Another thing when Emmy walks and her tone kicks in both of her legs usually come up, well Emerson has learned to seperate her legs from her upper body which allows her to have tone but only through her arms and it doesn't effect her legs. So basicallly she doesn't pull both of those legs up at the same time anymore! Yay! It just shows that she's able to control her body more. So with the walking Emerson is doing so good she does great with lifting and putting down her left leg. Her right leg she can lift but sometimes needs help putting it down but it's okay she'll get it.

Emerson's speech therapist has come back, she was out for about two weeks sick. Well since she has come Emerson has been a lot more vocal. Also today we heard the "wa" sound. It's a new sound for us. It was good to hear but when we heard it we had to take a double look. It's really exciting hearing and seeing the changes in Emmy!

Early Steps coordinator came for a visit end of last week and discussed Emerson starting school. Threw me off just a bit. I had so many different feelings going. I am excited, nervous, scared, and sad. I know it's for the best for her to go to school but Im scared something will happen and she won't be able to tell mommy if someone hurt her feelings or her. Im nevous for her to ride the bus, so I think I'll just bring and pick her up for now. And sad because she's growing up and really ready for school. Excited because she'll get that interaction with other boys and girls her age. So anyway that's just the few of my feelings. I know deep down she'll be fine it's just me having to get over all of my fears. And I will. So with that meeting we also discussed increasing the frequency of PT, OT, and Speech. Well I got a phone call today and it's a go! Emerson will now be getting two days a week for one hour of PT, OT, and Speech! Yes. Just what she needs. I am super excited and can't wait until it comes into affect.

If you remember Emmy had her levels drawn about a week ago to see if her seizure medicine can be increased. Well I spoke with Dr. Tilton today and she said that her levels show that we can increase her trilptal or keppra well we decided that we would increase her trilptal. So fingers crossed that this increase will STOP her seizures! Also the blood work showed that her thyroid is low so she'll be sending that information to an endocrinologist to see if it's something that needs to be done about it. Until we hear from the endocrinologist.

Right now our lives feel content. I enjoy seeing all the changes in Emerson, I know I have a hard time sometimes but from day 1 until now Emerson has made some really big gains and I can not be more grateful and blessed. God always has a plan and his own timeline even though we may not see it right away. And I still don't quite see it all the time but I know in my heart he is working on my precious Emerson one small day at a time and healing her! And hopefully this slower paced life stays around for a few months. Content!

Slow and Steady.....Wins the race.

So It's been a while since my last post and a lot has happened. So the auction started Feb 1st and ended Feb 7th and it was a huge success! I couldn't be happier with the outcome. We raised $2000! In the middle of the auction happening Jonathan Menard from The Harold Guide called and asked if Emerson could be in the paper, and to advertise the auction. So Emerson was in the Harold Guide http://www.heraldguide.com/details_archive.php?id=8639 
And the Times Picayune http://www.nola.com/picayunes/t-p/riverparishespicayune/index.ssf?%2Fbase%2Fnews-18%2F1296715269302360.xml&coll=1.

On top of that fantastic news a friend of mine started a proclamation for February 19th to be Emerson Louise Dean Day in St. Charles Parish. We got to go to the court house on Feb 7th and receive a plaque with all of it on the plaque.

Oh and on top of that, theres even more news. Glynn Boyd from WGNO TV called and said that he saw the newspaper about Emerson and wanted to do a story on her and the auction. So we did. They followed us to Children's and asked us about how the accident happened, how she is now, and how the auction did. Well while we were telling him how great the auction did, he asked us how short we were for the NAPA Center and he called a local businessman Sydney Tores and informed him what was going on and how much we were short and he donated the rest of the amount for the NAPA Center! Looking at all of this we are just so truly blessed that Emerson will be going to NAPA Center to get better. To see us on TV visit this link http://www.abc26.com/videobeta/d9ebebaf-912d-4ee3-9f5d-ae6553b540c0/News/Emerson-Dean-Needs-Specialized-Therapy-In-California-and-How-One-Local-Businessman-Helped-Make-It-Possible-Glynn-Boyd-Reports-2-08

So my little Emerson is a little movie star, no autographs please. lol. Well that was our week last week. But I am not done telling everyone how blessed and giving our community is. Another local businessman does a monthly Cruise Night where owners bring there cars to show off and they have a 50/50 raffle at the end of it. Well the friend I told you about earlier her dad went around the parish giving out flyers for the fundraiser she'll be doing for Emerson and stoped at Louis's Wrecker Service and they were so touched by Emerson's story that they decided to have the Cruise Night this month for Emerson. How blessed we are!  And the Cruise Night was a success. We were told that the outcome was three times it's usually. At the end of the night the 50/50 was done and they raised $242 but the generous family that won the 50/50 decided to give the entire winnings to Emerson. So with the 50/50 plus a few other donations from that night we raised $539. Again need I say how blessed we are! I can not thank everyone enough for their donations and coming out that night. It was a success and I couldn't be prouder of my home town. Everyone has truly come together in helping Emerson out. Thank you again to everyone!

Well I am not done yet. I know right. The friend I have been telling you about through this whole post has also offered to do a fundraiser of her own to help Emerson out. It will be held this Saturday February 19 from 11-3. It will be help at 107 Badalamenti in Luling, LA off of River Road. And there will be Jambalya $3 a bowl and 5 vendors. For more information check out the link http://www.stcharlesparish-la.gov/index.aspx?page=18&recordid=5479

So on to Emmy. She is doing great. No big leaps of improvement but improvements. Emmy has had a lot of doctors appointments lately Emerson saw her Neurologist Dr. Tilton on February 2nd and we had A LOT to talk about. So here it goes. First Dr. Titon hasn't seen Emerson since October and she couldn't believe the improvements in her. She got to see Emerson stand, she shined the light in her eyes and gasped at the improvements with her vision! YAY Emmy! She was super stoked about the fact that she's taking assisted steps and loving to stand. She commented on how much Emmy was moving her legs and that there were purposful movements. And purposeful was a nice word to hear for once. Everytime when we were in the hospital and we'd ask did she do that by herself and it was always Always ALWAYS answered with we don't know but more then likely it's involuntary movement. So the word purposeful is nice NICE nice to hear. She also got to see Emerson smile and she was astonished. She sayed she remembered me asking in the begining if my baby would ever smile again and her answer was she didn't know. So she was overjoyed to tell me, Yes she will and is smiling again! So after she saw all the amazing things Emerson is now doing we discussed the treatments she needed.

First we discussed those pesky little seizures. Boy are those things annoying. Emerson is on three different seizure medications. Neurotin, Keppra, and Trilipatal (my spelling is HORRIBLE, sorry) And with all of those three and the extra little vallium these seizures are still showing. She has at least 20 seizures a day if not more. Sounds bad I know. But they aren't grand mal seizures thank God. They are petit mal seizures, atonic seizures, and myoclonus. Both atonic and myoclonus seizures are catergorized under petit mal seizures. And all atonic seizures mean is sudden loss of muscle strength and myoclonus are twitches or jerks. And petit mal seizures are "absense seizures". It is a brief (usually less than 15 seconds) disturbance of brain function due to abnormal electrical activity in the brain. The petit mal can occur as the only type or happen along with other types. Well Emerson's happen with other types. Her typical seizure type is her entire body goes limp and her hands draw up to her mouth and her eyes twitch up and down then to the side then they get cross eyed. That's the biggest petit mal that she has and it usually lasts about 10-15 seconds. The next that she has more of is just the eye twitching with her body going limp and that lasts about 5 seconds. And sometimes we hear a lip smacking with these seizures. I know a lot to understand. And what's CRAZY about seizures is that the more medications you give or the switching of medications her seizures can change and Emerson's do. Because in the begining of seizures all she has was her right foot would pop out and her eyes would twitch and it was so quick that no one had seen them until she had them for a few weeks. So anyway here is where we are now with seizures and the fix isn't simple. First we were told to get Emerson's levels drawn so that she can see in her blood the level her body tolerates the medications on and what medications may help. So her levels have been drawn and now we are just waiting on getting them read and what the plan is next.

Next we talked about getting a swallow study done because Early Steps wants to start working with feeding with Emerson but couldn't until that was done. Also too she has been drinking thin liquids (ex. water, juice, etc.) only at therapy and we needed to see if she was okay to continue doing this at therapy and brining it to use at home. Well she had the study done on Thursday Feb 10th and not what I wanted to hear. But she slightly aspirates thin liquids which just means that some of the liquid went into her airway causing aspiration and she didn't cough which is the silent part of it. But she can continue to do baby food because there is no aspiration there. But to counteract with the bad news there has been improvements in the thin liquid aspiration since the last swallow study. This swallow study showed aspiration but not as much. Yay! It's improvements and that's all I could ask for.

Now we also discussed another round of botox. Yes you heard that right botox. The botox is used to relax her muscles so that she can move them without so much tone being in the way. Emerson had her first round of botox while we were still in the hospital around September, and it did wonders on her. Again thank God. She was given botox peri-spinal, her legs, forearm, and biceps. We got amazing results in her spine and legs. So this go round we are only doing her forearm and biceps. And it is scheduled for March 31st. The forearm is to open up those fingers that stay fisted and the bicep is being done so that we can get full extention of those arms and not keep them bent up. So fingers crossed and prayers said that this round of botox can be Emerson's last and her fingers and hands will do what we need them to do for her to continue to improve. In the picture below you can see how her hands are fisted and her hands don't get full extention all the time.

And lastly we discussed her getting another triple evoked potential test done and that is scheduled for March 15th. A triple evoked potential is testing her vision, touch, and hearing. What they do is put her under and hook a bunch of electrodes to her brain and flash lights in her eyes and look for the signal from the optic nerve to the brain and she how it reacts and the same goes for hearing and touch. Emerson had it done previously in October and they results were that she had cortical blindness which just means that everything is working but the optic nerve isn't getting the signal to the brain but it could improve. And then the hearing was done and she can hear but it was delayed hearing. The touch wasn't done fully because she had her feet in casts to correct the "ballerina foot". But the touch they did showed it was delayed as well. Again all this wasn't great news but it was news that just because it is the way it is now doesn't mean it won't improve because it could. So we shall see what the new results will be. Again fingers crossed and prayers said that she's at least improved.

So all in all our neurologist appt. went very well. Emerson truly continues to improve little by little and like a good friend told me "slow and steady wins the race" that's just what Emerson and God are doing slow and steady wins the race and Emerson will win the race.

Emerson is scheduled to see her neuro-opthmologist Wednesday. But today Emerson had PT with Early Steps Hilary and she did FANTASTIC. She did a little bit of tummy time and put a little bit of weight through her arms and lifted her head. She didn't want to stand too much today, but she did well with sitting up she helped Hilary pull herself up and when she sat up she had great head control. Hilary and I couldn't be happier. Go Emmy Go! So to wrap all this up I just wanted to say thank you to everyone who donated and participated in the auction, everyone who came out and donated to the Cruise Night, everyone in general who donated, Louie's Wrecker Service, and Dwan for doing so much for Emerson and our family. We truly can not thank everyone enough from the bottom of our hearts. I also want to say thank you to my entire community for coming together and helping out Emerson and our family I am so proud to live in St. Charles Parish.

Push For Emerson!

pushforemersonblogction.blogspot.com

Above is the link for Emerson's Blog Auction! Don't forget to check it out. Tomorrow is the last day it ends at 7pm CST. 

Thanks! Happy Bidding Everyone!  

My heart aches

Boy is my heart aching tonight. My 5 year old found an "old" picture of his sissy and came in our room busting out crying. He yelled "I want her to be better already! What's taking so long?" He listed all the things he missed about her as tears rolled from both of our faces. I couldn't help but to agree and feel very sadden. I wish so badly that I could take his hurt away! I feel so guilty tonight. Guilty that my daughter drowned, guilty that my family but most importantly my son feels pain from this, and guilty that there's not much I can do for my daughter. Except what I am doing researching alternative therapies and trying my damnest to get the funds to send her to the treatments.

I just can't even explain how long and sad our conversation was with our son. He had so many questions I didn't know the answer to. But mom is supposed to know everything and I don't and it frustrates me. Today just like everyday I wish and pray this never happened. I can't help but to think about emerson's future either. What WILL she be able to do, when, why not now? Why couldn't she be the lucky one like Bronson Stalker? Sigh. I could go on and on.

I try my hardest to stay strong and positive not only for my sanity but to keep my son and husbands sanity and faith but sometimes I just break. And tonight was my breaking point.

To all reading sorry this blog is so all over the place but it's what's on my mind.

Another fear my husband and I if we die tomorrow what would happen to my children? We have nothing to leave them. How would Emerson be taken care of my parents aren't getting any younger and I don't want any strain on Joseph as the big brother to be burdenby having to are for his sister. Does anyone else think about that? Sigh. Well enough for tonight I am going to try and get to bed we have a neurologist Appt. tomorrow with Dr. Tilton. And I'll be sure to post any news tomorrow! I'd also like to thank everyone for their donations to the blogction I can't express enough how thankful and blessed we are. Also to everyone who has made bids so far. It hasn't even been one full day and we've had tons of bids. Thank you to all. Many blessings to you and yours! Sleep tight. Hug your kids and be thankful always!

Blogction

Just a reminder today begins the blogction! Everything is blocked until 7:00pm tonight but once 7 o'clock hits central standard time the auction will begin and it will end on Monday February 6, 2011 at 6:00pm. Please enjoy!