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!