HBOT Here We Come!

16th Annual Jason Klause Golf Tournament

First I want to touch a little bit on Emerson's fundraiser this year, especially since the fundraiser is the reason why we are able to do the HBOT. I want to thank from the bottom of my heart everyone that donated, participated in the tournament, or just came to support my angel. I can't express how much that meant to us all. I also want to thank all the members of the Southwestern Sportsmans Social Club. First for choosing to benefit Emerson again this year, how amazing that you thought of us again to help her gain a better quality of life. And second for taking out a lot of time putting this whole thing together. I know it wasn't an easy task and I thank you all from the bottom of my heart for putting your heart into it and making it the best possible.

I believe we had a great turn out even though it rained. Unfortunately we didn't raise enough money to complete a full 40 hour sessions of HBOT (Hyper Baric Oxygen Therapy) but we are planning to continue with the HBOT and just receive as many sessions as the money allows. :)

Dr. Hatch HBOT

Yesterday July 20, 2012 we visited with Dr. Hatch. It was a two hour meeting so I'll sum it up. First of all he said that he has treated about 35 near drownings with HBOT and it is one of the most difficult injuries to treat. I already knew that but it still made my heart sink. On to better news.... Dr. Hatch said that Emerson is one of the most functioning near drownings he has seen. He said most can't move their head, extremities, or make noises and Emerson does. He said Emerson is very aware just trapped inside her body dying to get out but her brain won't allow it. Again good news but makes me so mad that as her mommy I can't do a damn thing to "get" her out! We continued on with how the accident happened and how long ago. We also discussed other random things like who we were referred by, how angry he gets to hear neurologist talk against HBOT, & how he's treated he's whole family. Even his two sons that had a concussion. He also told us that most near drownings come in striving to be where Emerson is awake, aware, and moving. But since Emerson is already there he can't imagine the progress she can make with this treatment.

After all the talk he did a full physical on Emerson. First he started with her ears and knew right off that someone uses q-tips in her ears. lol. Guilty. I am a big fan of q-tips and using them to clean out kids ears, I hate seeing their wax. lol. But apparently all it does is shoves the wax deep into the ear canal. So after he made me feel horrible for that, lol, he continued the exam. He looked at her eyes but she really wasn't having it, she kept them shut pretty tight. So we moved on to sitting her up in my lap and him testing her reflexes in her legs, good reflexes. Testing her touch sense on the bottom of her foot, good. He also checked for clonus, which I knew she had but only gets maybe one every month if that. And he showed that she does have it but more in the right foot not really at all in the left. In case you don't know what clonus is it's a continuous rhythmic reflex tremor. Again something I already knew but glad to hear I was right. Then he came back up to the eyes. She was ok with him looking now. He noticed that her eyes do dilate but it's delayed and he said that's pretty typical. He then tested her vision. He moved from the right to the left side of her first calling her name to see if she would look. The first time he did it she took about 15 seconds to look at him then he started showing her the light again from the right side then to the left and it took her about 5 seconds to look from right to left at the light. He was so amazed yelling "Great Job Emerson! *giggle* gosh she's just so smart" I have to be honest made me feel so great! I know she's smart and I KNOW she's in there and shes dying to come out. After that he went to her hands which are kind of bad. Her tone is intensified there and her thumb stays pretty much nudged into her plam or in between her pointer and middle finger. She does have reflexes in her arm but they aren't as prominent as in her legs. That's ok with me it's something we already knew. He was done with the exam and we began talking again. Basically he said he won't treat Emerson unless she completes the full 40 sessions because that's the amount needed to see a difference.

Next he talked about what goals we have for Emerson. Now some of you might not understand our goals and why we don't have others in place, and all I can honestly say is once you've been thrown this and been told your daughter will never walk, talk, move, eat, and do basic daily functions ever again you start to rethink what really is important in life. With that said these are the goals we gave him.

1. Communication.
Yes Emerson communicates in her own way but I'd love for her to get across to us and others what's on her mind and not just the basic needs like hungry, hurt, and sleepy which she communicates now with crying. I don't care if she communicates via sign language, "baby talk", or even via an i-pad that puts her thoughts into sentences read out for her. I just want her to communicate her thoughts and feelings.
2. Seizures decreased or gone
 With her having seizures it interrupts all that she's trying to do. So not only will she be able to function more without having seizures to interrupt her but she'd be able to get off so much medication and be "more" awake! She's on 4 seizure medications, just imagine if you were on all that. It makes you drowsy, inpaire judgement, dizzy, and blurred vision. Just read all the cautions. It's crazy. So that would be awesome if she could get off all or even some of the medications.

And that's basically all our goals for now for Emerson. Hopefully we'll achieve both but even one would be great! I know some of you may be wondering why walking isn't on our "wish" list. Well we honestly don't care if she never walks again. I can see every ones mouth dropping now. lol. But think about it how many people out there don't walk and live very normal and happy lives? Exactly! That's how we feel. She can live just as normal as a life as the next person in a wheel chair.

We spoke a little about the financial aspect of this whole thing and then about when we can start. He would like us to begin August 10th because that's when he returns from a trip. So it's set Emerson will begin August 11th and go for 40 sessions. If we see improvement we will be thinking about doing another fundraiser to do another 40 sessions. So please continue to PUSH for Emerson as her journey is not yet over, she's still fighting to have the best quality of life possible and her family is behind her 100% doing the same!

This is the chamber Emerson will be in when the sessions start. There's a tv in front and speakers on the inside. :)

All Napa!

So I haven't written about Emerson's progress in Napa nor all the changes that have happened this year, it's just been a very hectic year full of many changes. So here it goes.

Napa Center was phenomonal! It was a costly trip which is what we expected but we weren't totally prepared for what came. First of all I'd like to thank Dwan Pitre, Southern Sportsmans Social Club, and all the people who donated on Emerson's behalf because of you all this trip was possible! Our family can not thank you enough!

This was not only Emerson's first plane ride but it was also big brother's. And NOT to my surprise she was quite miserable the entire flight. I brought all the proper preparations in hope it would calm her. I brought some ear plugs, nunnie, blanket, and pillow. And even decided to take her car seat hoping it would make for a more comfortable flight. 

Waiting to board the plane :)

 

So when we arrived at Napa they began with seeing what Emerson could do and some streches.

Quickly they began to get a feel for Emerson and started her right away with the neuro-suit. She didn't seem to mind it at all. Taken from Napa Center's website this is exactly what the neuro suit is and does. The NeuroSuit, actually frames the body providing support and resistance simultaneously. It improves and changes proprioception (pressure from the joints, ligaments, muscles), reduce a patient’s undesired reflexes, facilitates proper movement and provides additional weight bearing distributed strategically throughout the body. This additional weight bearing provides strong feedback to the brain which helps create new improved patterns of movement such as when walking while the body is maintaining a more upright, correct posture. This neuro suit was only the begining of what Emerson endured her three weeks there. Emerson also did different excercises in the spider cage as well as streches. She also did a few different techniques that the therapsit learned in Venezuela. Emerson's improvement while at Napa was fair. She was definitly more alert, was able to control her tone better, able to sit while holding her at her waist instead of previously at her shoulders.

 While we were there we also were able to try hyperbarics. Hyperbarics is where Emerson was breathing oxygen at a higher level then atmosphere while in an enclosed chamber. The pressurized oxygen allows her to breath and her body to recieve 10-15 times more then normal oxygen. From the 2 1-hour sessions we tried we notcied a difference in Emerson. She was so much more alert, focusing more, and even giggled for the first time.

Above are the two different techniques that the therapists learned from Venezuela. The first one is forcing Emerson to use gravity to pull her self up to midline. The second one is allowing her instinct to take play and pull her legs into crawling position. Not so great in either, the first time around below are videos of her doing them both again at the end of the three weeks. See a difference?

Here are some more pictures of all the things Emerson did.

All in all our trip was very successful! Emerson made some great progress and we even tried hyperbarcs. While there we were also able to see Dr. Hadayat who is a seizure specailist. He ordered blood work for her and examined her head to toe. One of the things he said about her was that her soul was detached from her body and she was still in a state of shock from her accident. Also that she has the stress level of one in Iraq. Here is what I pulled straight from the findings overview I recieved from Dr. Hadayat.

Patient remains in a state of shock from the drowning; Emerson’s learning potential is blocked for a Number of reasons: insufficient dopamine and central norepinephrine activity, and poor access to her memory to build upon when learning new things; most of this is due to the stress of the drowning and the over--‐stimulation of the adrenal gland; Emerson seems to be lost in her own mind and not emotionally engaged with her environment. Recommend exposure to small groups of relatives and compassionate friends; Recommend prayers and spiritual work as well; Recommend speaking to Emerson directly and telling her how much you love her and want her to stay, that the drowning is over and things will get better.

Refractory seizure state arises from an over--‐stimulated adrenal gland with elevated ACTH and strong parasympathetic activity; typical secondary factors are less pronounced (mitochondrial strain— present but minor), rather there is a profound ischemic tendency, which may cause acute periods of metabolic insufficiency leading to seizures throughout the day. Benefit of hyperbaric oxygen will be primarily to improve circulation, though it should also improve the redox insufficiency.

2.5 year old female with strong seizure terrain from over--‐stimulation of adrenals, over--‐activity

Parasympathetic activity, and areas of ischemia. Patient appears to be in a state of shock from her drowning and may not have fully re--‐integrated with her body; There is a blockage of normal mental development.
OTHER (Supplements,Diet) Hyperbaric oxygen, 1.3 ATM, 1--‐2\ times per day for 40 days, then repeat every 4 weeks

We truly are honored to have been able to even see this specialist being that he only visits Napa Center monthly and we happened to be there and get an appointment. He put Emerson on some tinsures, suppositorys, herbs, and other various things. We have seen a great deal of decreased seizure activity and couldn't be more gratful of Dr. Hadayat!

So three weeks came and went really fast. Not only did Emerson make some great gains but we met a GREAT group of people that we will never forget!

 

5/19/11--- Post that never got posted, sorry.

So it's been a little over a month since I have posted and so much has happened. I don't even know where to begin.


Since Emerson has been decannulated she has been doing wonderful! Mommy still uses her apnea monitor at night......it's my security blanket at night. :) The only issue we are having is that the hole hasn't closed up yet but we have an appointment in the first week of June (which is slowly creeping) to discuss what to do about this, but it looks like they'll be stitching it. But we shall see.


Emerson had a visit with her neurologist and before papers would be signed for NAPA Center she wanted Emerson's hip and back checked out since there were bad. We also had levels drawn to see what to do about her seizures. All in all this appointment went well no major changes, yet.


We visited with the orthopedic and he said her back was fine to attend Napa center and that her feet were great as well and that we could actually stop using her AFO's.

It's a........... Neck!

Well Emerson got decannulated offically on Friday April 8th. Let me start with her background story.


Monday was her sleep study all night and she passed it with flying colors! Then Tuesday around 2pm they did her brocoscopy. Bronchoscopy is a procedure that allows your doctor to look at your airway through a thin viewing instrument called a bronchoscope. During a bronchoscopy, the doctor will examine your throat, larynx , trachea , and lower airways. When Dr. Levine did this he found a granuloma. A granuloma is a small area of inflammation in tissue due to injury. Dr. Levine said it was very common that most of his trach patients get them. It's caused from being intabated, trached, and suctioned a lot. But he said it was the biggest granuloma he's seen in a long time. So with that said Emerson was unable to get decannulated on Tuesday instead they consulted ENT and sent us home to return on Friday morning for removal of the granuloma and decannulation.

On the above picture the second row, third picture is a great picture of the granuloma. The white is the granuloma.

So Friday came and Emerson was scheduled for 8am to have her granuloma removed and then decannulated. Emerson went into the procudure on time, it took about an hour. Everything went very smoothly and we got called to the recovery room to be with her as she woke and she was doing fine. Doctor wanted her oxygen to be between 90-92 or above and she was doing that for a while then her oxygen dropped to 89 and 88 and they decided to put her on some oxygen and her levels went up. About two hours after the procudure her room was ready and we got settled in. At that point Emerson was still on the oxygen and was left on it throughout the night. However throughout the night they slowly weened her off the oxygen and was completly off by 6am. When the doctor came in he was concerned that she wasn't off the oxygen long enough to send her home so the doctor decided to keep us another night to monitor her off the oxygen through the night. So even though I didn't want to stay another night we did since it was best for Emerson. Through the night Emerson did great without her oxygen and we were able to go home Sunday around 2pm. Now my sweet Emmy has a.......neck!

Emerson is continuing to progress a little everyday. And I can't thank God enough for his healings. Lately Emerson's legs have been getting stronger and last Tuesday at therapy Emerson took 4 independent steps while in her walker. Meaning she had no assistace from her therapist!!!! Also too her arms are getting stronger. Emerson has been pushing up on her arms and supporting herself while lifting her head.

So all in all Emerson is gettting better slowly and like I said I can't be more blessed or thankful! So please continue to PUSH for Emerson!

Decannulation

Decannulation - The removal of a cannula: in the case of children with trachs, the removal of the tracheostomy tube.

Well Emerson is at Children's Hospital and is in the process of getting her sleep study done for possible decannulation.

We were told to get to the hospital at 5:30pm and head to the ER to register. We arrived at 5pm registered but had to wait about an hour for a room. While we waited we ate. We finally arrived in our room around 6:15pm at that point we told all of our old nurses hello and then they weighed Emerson and took her height and measured her head. She has a pretty big head like her daddy, lol. Then around 7:20 or so we brought her downstairs for an xray. We came back up and got her trach downsized from a 3.5 to a 3.0, and she did good. Then they began to set her up. And boy did that take a while. She has so many wires and straps hooked up to her. She has this two pronged thing in her nose, it's there to let the computer know if air is coming in and out of her nose or mouth. She has a microphone on her chest. She has leads on that measures her respiration and heart rate. She has a probe on her foot to tell her oxygen level. She has two straps around her chest for respiration as well. She has another blue dot on her foot and I forget what that's for. Poor baby has so much hooked up to her. After all that commotion she got her meds and fell fast asleep. Then the nerve wrecking part happened........ they capped her! And she did great didn't freak out, didn't start breathing rapidly. Nothing. Thirty minutes passed and she was still doing great but by that time it was time for daddy and brother to head home because he's too little to stay overnight, when bubby kissed his sissy's hand her heart rate went up, she knew her bubby kissed her! lol. So it's been about an hour and a half now and she's sound asleep and doing great!

Last Friday Emerson recieved botox again. Yes you heard me right botox. The botox is used to help relax her muscles. Botox the first time around was used in her spine, feet, and hands. Her spine and feet took really really well to the botox. Her spine no longer has that 20-30 degree curve and her feet are no longer drop foot. But her hands didnt really change much. So we decided to give it another try for her hands. She had a total of 8 injections 4 on each arm. One in her bicep two in her tricep and one in her thumb muscle. We are now in day 3 of this and I see a slight slight difference but nothing major. It usually takes up to 2 weeks to really see a difference. So we shall see. Prayers that it works.

June is right around the corner and I can't wait! Napa Center booked and paid for 3 weeks, plane tickets booked, and hotel booked! I am so excited I spoke with Emmy's PT and the PT at Napa Center and told them my goal for Emerson which is to get complete head control and to be able to sit unassisted. I thought at first my goal was a but not reachable but they both said that my goals are realistic. Yeah I hope Emmy reaches at least my goal for her and if she goes beyond that I would be exstatic! I have to say though if Emerson never walked again, sat up by herself, or had complete head control ever again it wouldn't bother me so much. What bothers me most is that she's not here with me mentally. I miss her personality, her communication, her laughs and smiles. However the human in me wants it all, so I will continue to pray for a FULL healing on Emerson. Why ask for a cup of water when God could give me the ocean? Exactly why ask for only healing her feet I am going all out and continuing to ask for complete healing on my precious baby girl!

So all in all everything is pretty smooth sailing no major changes. I just ask that everyone continues to PUSH for Emerson.

A Sign.

Today was a good day. Emerson had therapy at Children's and did pretty well. She still isn't feeling 100% but she's much much better.

Yesterday we decided to take a trip to see her pediatrician about her ear infection as it was getting worse and still draining and Emerson was in a lot of pain. He decided to put her on some ear drops and changed her antibiotics that the ER gave us. He said she has a draining ear infection and possibly a popped ear drum. He said he couldn't see too well with all the drainage and when he tried to clean the drainage Emerson pushed his hand with her fist and cried and cried and cried so he decided not to mess with it. So we have an appointment to see him next Wednesday to check the progress of the infection and for bubby's 6 year old check up. But just from two doses of antibiotics and drops the swelling has gone down, no more fever, not as much pain, and drainage has decreased immensely. Thank goodness because she was in so much pain.

So Emerson had therapy at Children's and in PT she was put in her walker and did pretty well. Her head control was pretty good while in the walker and she took a few steps but you could tell she just wasn't into therapy too much today. That's okay because I know she wasn't feeling good. In OT they pretty much just stretched her. She did a little tummy time but she wasn't digging that at all.

While at Children's God kept putting this women in front of me to meet. A few months ago a friend of mine told me about a little girl that suffered an anoxic brain injury but just got it a different way and asked if it would be okay to give her my information once she was ready to talk. And of course I said yes and decided to find her on facebook and started to follow what was going on with her daughter from there waiting for her to contact me. She never did, and I understand she's going through a lot. I knew the little girl was at Children's but had never really seen her, or so I thought. I had seen her but no one said her name so I never knew if it was her. Well today while we were leaving PT she was coming and Lori one of Emerson's old physical therapist said the little girls name. I turned to my husband and said "that's the little girl I was telling you about. I want to talk to her mom so bad, but I don't know what to say." So I shrugged it off and went to OT so we wouldn't be late. While there this little girl came up again and Leslie Emerson's old occupational therapist said she was coming there because she had her next. I got all anxious again because usually that doesn't happen to where our schedules would match up, so I took it as a sign from God that I HAD to meet her. So as I was walking down the hall to leave as freaked out and decided I didn't know what to say. So I asked one of the secretary's I am close with to introduce us. I introduced myself and Emmy and told her what happened and told her I knew about her and her daughter but she didn't know about me. We began talking and finding out how her daughter is doing and how Emerson is doing now. It was so very nice to meet her and her daughter. She reminded me so much of Emerson when she was in the hospital and her mom of me. Feeling so helpless and not knowing what the future holds. I am still helpless and don't know what the future holds but I am at a point to where I am getting used to our new life. I can't thank God enough for making us meet TWICE. We talked for about an hour but could have talked forever. We cried about the future, talked about the nows, talked about the future, and smiled about our blessings. I knew how she felt and she knows what I went through. It's so unfortunate why we are meeting but like I said it's nice meeting someone that knows what you are going through. We are very similar.  Her daughter is about 20 months now but was 17 months when her accident happened and Emerson was 18 months when her accident happened. She has an older son as do we and her father is from Cuba and my mother is from Cuba. I just found it quite interesting how much we had in common. I have a feeling were going to be good friends, I sure hope we do. Again thank you God so much for bringing us together.

On our way home Emerson bit her finger AGAIN. And out came the tears. I hate that I am so happy about her crying but I really am so ecstatic when she crys and feels immediate pain. So I pulled out my phone and took a picture of my beautiful crying baby.

See the tear running down her face and the tears just leaving her eyes. lol. It took us forever to see tears and I couldn't be more happy to see them! I do wish however she would STOP biting herself. I never catch her doing it so I don't know if it's on purpose or if she puts her hand in there and thinks it's her chewy or something. I don't know. Like I said I just wish she'd stop.

Another thing we have noticed about Emerson is that with her muscle tone she is able to control it. What I mean is she usually has muscle tone and her hands draw up and so do her feet into a frog position. But for the past few weeks if she gets tone in her hands it doesn't happen to her legs. Go Emmy! That's just showing that her brain is working. Also too she has been able to put her hands at a relaxed position for much longer. She has also been batting a little at her toys when she's on her play mat. I'll have to get a video of it and post it. Before she was just push her hand through the toy every 30 minutes or so and we never really knew if it was voluntary or not. We secertly always hoped it was but never knew for sure since it was so inconsistent. But again for the past few weeks she has been straighting her hand to push the toy and she does that about every 2-3 minutes and twice. Twice I mean she pushes it forward then back takes a break and about 2-3 minutes later straightens her hand again and pushes it forward then back. It's such a wonderful thing to see. Also she is tolerating stimulation in and on her mouth and face. She doesn't get as frustrated with it. She still isn't a complete happy camper when I brush her teeth but she's so much better I can actually get through a brushes without her fist on my arm and her mouth clenched down on the toothbrush and me struggling to get it out. lol.She is also following light so much better and quicker, it's not as delayed. So overall in the past month Emerson has made some nice gains. Thank you God! I truly have to give him all the credit. The therapist and doctors have helped but this is all God's miracle. I still wish it would be quicker but my patience is getting better. I am learning to just accept what is, let go and let God. And so far it is working wonders. I couldn't be more happier with Emerson's progress and our life right now (except for our own house, lol.) The pictures below are showing how relaxed she has been lately. In the first picture she wasn't sleeping I caught her closing her eyes when I snapped the picture. But this is just awesome because she usually has her hands up to her chest.

Alright, heading to bed because I have a lot of cleaning to do tomorrow while I have the time. Thanks to everyone who keeps up with Emerson's progress. We couldn't be more blessed and thankful for everyone's thoughts and prayers and Emerson's progress thus far and I can't wait to see the rest of God's work in my daughter!

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! 

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 pushforemersonblogction.blogspot.com.

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 pushforemersonblogction.blogspot.com. 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.