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.
Friday, July 29, 2011
Tuesday, April 12, 2011
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!
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.
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!
Monday, April 4, 2011
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.
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.
Tuesday, March 22, 2011
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!
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.
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.
Saturday, March 19, 2011
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!
Wednesday, March 16, 2011
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!
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.
Tuesday, February 22, 2011
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!
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!
Monday, February 14, 2011
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.
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.
Sunday, February 6, 2011
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!
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!
Tuesday, February 1, 2011
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!
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!
Wednesday, January 26, 2011
Eventful Week.
So as you all know Emerson's blog auction is now open for viewing only. The acutally auction will begin Tuesday February 1st at 8pm central standard time and end Monday February 7th at 7pm central standard time. So go ahead and check it out at 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.
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.
Tuesday, January 25, 2011
Real Quick
Real quick I just wanted to let everyone know that the auction is now open to everyone for viewing only. The bidding will not begin until next week, but please feel free to view all the great things we have.
Friday, January 21, 2011
Busy, busy bee!
Well I have been super busy setting up the site for the blogction and posting all the donations. And I must say we are extremely blessed! From the help of family, friends, and strangers they all have exceeded my expectations on the amount of donations I would recieve. I can not thank everyone enough for all they have done so far. A big huge gigantic thanks goes out to Shauna who gave me the idea for this blogction and has helped me et up all the "behind the scenes" work. I truly could not have done this without her.
Now I am stoked about this auction, only bad thing is I have so much great stuff that I want to bid on it myself. But that wouldn't help us out at all. lol.
So I haven't just been a busy busy bee with the blog but I have been busy planning my sons 6th birthday too. I can't believe he'll be six, my big boy. He's so mature for his age but with what he's been through with his sister, it's no wonder.
Another thing that is kind of holding me back and got me a late start posting all the donations is my computer. Well you see first the dang charger was fickle. I had to wiggle nd jiggle it just the right way for it to charge and put duck tape on it to stay that way. haha. Then my computer got a virus and just went completly kaput! But thanks yet again to a great friend Carm's husband is in the works of fixing my computer. He, with lots of struggle, was final able to save all of my pictures which was my biggest concern and he had to wipe my computer clean to factory setting. No biggie I got my pictures an my computer. Hopefully he'll be done soon. I can not thank him enough! So how am I writing this blog my iPhone. I had no clue I could blog from here.
Now Emerson. She has been doing really well with rolling to her side very consistintly and can roll onto her tummy and from her side to her back but it's not quite consistant yet BUT she's almost there! Go Emmy Go! Her head control is getting better too. We've also found new wys for her to smile. I know there just smiles when stimulated but hey it's a smile and I am taking it and rejoicing! She's still doing very well with eating too. And her legs are great! She loves to push up on them and stand with assistant. But I keep trying to tell her she's not going to be able to walk unless she gets complete head control, so we shall see becase she is pretty determined to walk without that head control! Stubborn like herdaddy I mean mommy :) Emerson had another session of Hippo Therapy and did pretty well and bubby even go to ride. He enjoyed that very much since he feels left out sometimes. Mommy is getting more and more used to the wheelchair. We have gone several places in it LOUD and PROUD! ;) Emerson's vision seems to be improving more too. I spoke with a friend ad she explined CVI (Cortial Vision Impairment) like this she sees like she's looking through a peice of Swiss cheese. I love that analogy. Also as her brain gets better so will her sight because there's nothing really wrong with it it's just the brain damage causing problems.
Now Emerson is steadly trucking along with improvements but her stupid seizures keep getting in the way. I swear there pesky little boogers. They are better then before with this new medication she's been on for a month now but there not gone and they get in the way of her trying to do things. Example when she's begining to roll over shell get one and boom it's done and she has to start all over. Same goes when she's holding her head up she'll be doing that for a bit and bam a seizure comes and messes everything up. UGH! They bite. But we have a visit scheduled for Dr. Tilton her neurologist on Feb 2 and I hope we can figure something out to rid these boogers but not make her sleep all the time. It's a tough balance. But we shall pray and God will take care of it, he always has and always will.
And finally Emerson went for her first dentist visit and I was worried because bubby has not so good teeth even though he brushes twice a day. I think heiridity (sp?) has something to do with it. Anyway Dr. Shaw says Emerson has beautiful teeth and no cavities! WooHoo! She also did really well with her touching her mouth. She usually hates when someone touches her mouth. She cried a little bit but mommy was holding her and loving on her which I am sure made the difference! :) So all in all Emerson is progressing and that's all I could ever ask for! Thank you God for answering my prayers time and time again. Even though our timelines are different your timeline always ends up making sense. "Be Joyful always!"
Now I am stoked about this auction, only bad thing is I have so much great stuff that I want to bid on it myself. But that wouldn't help us out at all. lol.
So I haven't just been a busy busy bee with the blog but I have been busy planning my sons 6th birthday too. I can't believe he'll be six, my big boy. He's so mature for his age but with what he's been through with his sister, it's no wonder.
Another thing that is kind of holding me back and got me a late start posting all the donations is my computer. Well you see first the dang charger was fickle. I had to wiggle nd jiggle it just the right way for it to charge and put duck tape on it to stay that way. haha. Then my computer got a virus and just went completly kaput! But thanks yet again to a great friend Carm's husband is in the works of fixing my computer. He, with lots of struggle, was final able to save all of my pictures which was my biggest concern and he had to wipe my computer clean to factory setting. No biggie I got my pictures an my computer. Hopefully he'll be done soon. I can not thank him enough! So how am I writing this blog my iPhone. I had no clue I could blog from here.
Now Emerson. She has been doing really well with rolling to her side very consistintly and can roll onto her tummy and from her side to her back but it's not quite consistant yet BUT she's almost there! Go Emmy Go! Her head control is getting better too. We've also found new wys for her to smile. I know there just smiles when stimulated but hey it's a smile and I am taking it and rejoicing! She's still doing very well with eating too. And her legs are great! She loves to push up on them and stand with assistant. But I keep trying to tell her she's not going to be able to walk unless she gets complete head control, so we shall see becase she is pretty determined to walk without that head control! Stubborn like her
Now Emerson is steadly trucking along with improvements but her stupid seizures keep getting in the way. I swear there pesky little boogers. They are better then before with this new medication she's been on for a month now but there not gone and they get in the way of her trying to do things. Example when she's begining to roll over shell get one and boom it's done and she has to start all over. Same goes when she's holding her head up she'll be doing that for a bit and bam a seizure comes and messes everything up. UGH! They bite. But we have a visit scheduled for Dr. Tilton her neurologist on Feb 2 and I hope we can figure something out to rid these boogers but not make her sleep all the time. It's a tough balance. But we shall pray and God will take care of it, he always has and always will.
And finally Emerson went for her first dentist visit and I was worried because bubby has not so good teeth even though he brushes twice a day. I think heiridity (sp?) has something to do with it. Anyway Dr. Shaw says Emerson has beautiful teeth and no cavities! WooHoo! She also did really well with her touching her mouth. She usually hates when someone touches her mouth. She cried a little bit but mommy was holding her and loving on her which I am sure made the difference! :) So all in all Emerson is progressing and that's all I could ever ask for! Thank you God for answering my prayers time and time again. Even though our timelines are different your timeline always ends up making sense. "Be Joyful always!"
Monday, January 10, 2011
Decisions!
Decisions. Decisions. Those are hard to make sometimes. But I finally researched and decided on what we are doing for our first fundraiser.
We will be having an auction style blog auctioning off some really great things. Like homemade baked goods, handmade items, certificates for services, gift cards, children's clothing, jewerly, art and more.
If there is anything anyone would be willing to donate please shoot me an email and let me know barbarabdean@gmail.com Whatever you are willing to donate you will be responsible for shipping the product to the highest bidder. Or if you know someone who would be willing to donate please forward my email address. Thanks in advance for all support.
Also too please join us for the auction to see all the great things we will have. The auction will be from February 6-12. Starting at 6:00pm central standard time. The blog site is pushforemersonblogction.blogspot.com I haven't listed the items quite yet as I am just getting pictures of all the items for auction. The blog will be set up completly very soon.
Emerson is still rolling to her side unassisted and her therapists have all commented on how great her elbows are. There is no more pulling! YAY! She also still has full range in her legs! Go Emmy.
Also I am realized any boucing or moving my Emmy loves because she smiles soooo big!!! I was changing her and she was just a smiling away and I picked her up to give her to my mom and I bounced her in my arms and she was smiling even bigger! It's such an amazing feeling when I see my baby girl smile!
This month is filled with Dr's appointments and tomorrow is one of many. We go see our pulmonologist. Hopefully it'll be a good one. Also tomorrow we have therapy at Children's and we are going to put her on the treadmill to see how she does. She hasn't been on it since she was in the hospital in August.
So please continue to pray for Emerson and that we raise enough money to send her to intense therapy! Thanks to everyone for our thoughts, prayers, love and support!
We will be having an auction style blog auctioning off some really great things. Like homemade baked goods, handmade items, certificates for services, gift cards, children's clothing, jewerly, art and more.
If there is anything anyone would be willing to donate please shoot me an email and let me know barbarabdean@gmail.com Whatever you are willing to donate you will be responsible for shipping the product to the highest bidder. Or if you know someone who would be willing to donate please forward my email address. Thanks in advance for all support.
Also too please join us for the auction to see all the great things we will have. The auction will be from February 6-12. Starting at 6:00pm central standard time. The blog site is pushforemersonblogction.blogspot.com I haven't listed the items quite yet as I am just getting pictures of all the items for auction. The blog will be set up completly very soon.
Ok. On to Emerson. Since last week she hasn't had any big improvements but she is doing great on strengthening her legs. Today daddy was playing with her and she stood up on the sofa! And in the picture you can see the indention in the sofa showing how much pressure she is putting on her legs.
Emerson is still rolling to her side unassisted and her therapists have all commented on how great her elbows are. There is no more pulling! YAY! She also still has full range in her legs! Go Emmy.
Also I am realized any boucing or moving my Emmy loves because she smiles soooo big!!! I was changing her and she was just a smiling away and I picked her up to give her to my mom and I bounced her in my arms and she was smiling even bigger! It's such an amazing feeling when I see my baby girl smile!
This month is filled with Dr's appointments and tomorrow is one of many. We go see our pulmonologist. Hopefully it'll be a good one. Also tomorrow we have therapy at Children's and we are going to put her on the treadmill to see how she does. She hasn't been on it since she was in the hospital in August.
So please continue to pray for Emerson and that we raise enough money to send her to intense therapy! Thanks to everyone for our thoughts, prayers, love and support!
Friday, January 7, 2011
Poems
Here are some poem I came across that just really touched me. Enjoy.
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over Earth Selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew." "Forrest, Marjorie, daughter. Patron Saint, Celia." "Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel." "But does she have the patience?" asks the angel. "I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it." "I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy." "But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side." "And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."
You often pity me, I see it in your eyes. You wonder how much I am aware of…I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the worlds standards, or great strides in development that you can credit yourself with . I do not give you understanding as you know it…what I give you is more valuable. I give you instead opportunities. Opportunities to discover the depth of your character, not mine, the depth of your love, your commitment, your patience, your abilities. The opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. Most of all I teach you hope and faith.
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over Earth Selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew." "Forrest, Marjorie, daughter. Patron Saint, Celia." "Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel." "But does she have the patience?" asks the angel. "I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it." "I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy." "But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side." "And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."
I AM A SPECIAL NEEDS CHILD
You often pity me, I see it in your eyes. You wonder how much I am aware of…I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the worlds standards, or great strides in development that you can credit yourself with . I do not give you understanding as you know it…what I give you is more valuable. I give you instead opportunities. Opportunities to discover the depth of your character, not mine, the depth of your love, your commitment, your patience, your abilities. The opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. Most of all I teach you hope and faith.
Wednesday, January 5, 2011
Two years old.
First let me start off by saying that yesterday Tuesday we went to Children's for therapy and as soon as we got to PT Hilary got out the walker to see how Emmy would do.
Let's back track a little, she has been testing Emmy every week either in the stander or walker to see how Emmy would do in them to see which would benefit her more to have at the house so she can begin the ordering process since it takes about 6-8 weeks to approve and get. The last couple of weeks she has been doing ok in both no big oohhh moments.
UNTIL yesterday!!! As soon as Hilary took her out of her chair she held her under her arm pits and Emmy was standing, yes standing. She was pushing through her legs and was holding herself up of course with the help of Hilary supporting her upper body, but hey that's a HUGE step. And of course I didn't get a picture but she did it again today at her peditrican's office so I am sure this is not the end of us seeing that and I will be sure to get a picture soon.
Also too beside standing like that, when she was put in the walker she was lifting one leg at a time and stepping down. It was awesome to see! The first time she was ever put in a walker which was while we were still in the hospital she would try and lift her leg but it was as though she had bricks attached to them because she could barely lift them, and her right leg would buckle when she would stand on it and lift her left leg. But yesterday her right leg hardly ever buckled. It was supporting her so good!! I was so impressed and proud of my Emerson. I truly hope this continues.
Ok. So my big girl is already 2 years old, and today was her two year old check up along with making up of her 18 month shots. Well as I was signing us in the lady handed me the paper to fill out about how your child is progressing. As soon as I saw it my palms got sweaty and my heart started to race. And I told the lady while looking at Emerson "She really can't do what's on that paper, do I have to fill it out?" And of course the nurse told me yes and once you answer no to three questions you don't have to fill out the rest. Boy was I bummed. So with the clipboard in one hand and Emerson's chair in the other I pushed her to a spot, sat down, and took a deep breath. I read the first sentence.....1. Your child should be able to say two word sentences such as "want drink", "get down", etc. Aaannndddd my eyes filled up with tears and they just poured over the page and I could barely read the next question, that I already knew was a no but I had to tourture myself and read it. lol. So as I am wiping and sniffling I read the next question......2. point to the animals and see if your child knows the names to the not just the sound they make. Boy if Emmy made the sounds of these animals I would be extatic. But again I marked another no. And well the third question I don't even remember I just threw it at my husband and told him to circle no and put her name on the top. *sigh*
I really don't know why that got to me so much today. I mean lately I have been so strong and so excited to see all the new things she has been doing. In fact my husband and I were watching her roll to her side and try very hard to make it to her belly yesterday and I turned to him and said you know these milestones she's reaching seem so much more exciting then the first time around. I mean we were hooting and hollaring at how well she was doing, so why did that damn paper get to me? I guess because although I am so blessed and thankful that Emerson is here and doing so well, I still wish this never happened and that she was the perfect little two year old she would have been. I will eventually learn to cope with it, never will I "get over it" but I will learn to cope with it one day.
Okay so on to how the doctors appointment went. First they weighed her and she is 29lbs, then they measured her and she is 35 inches. She's gained 9lbs in 6 months. :) Then the mean 'ol nurse came in to prick her foot for her iron and lead levels. Well no lead...woohoo. lol. And her iron is awesome, in fact it's pretty high for her age but the doctor was pleased. Then the doctor checked her out. He commented on how great her feet looked, her back is perfect, her belly is fine, her lungs sound great, her g-tube site is irritated but to be expected and no infection, her arms looked great and not much pull, her hands were pretty loose except her left hand was a little more stiff then the right but like we discussed it was her "bad" hand so the extra stiffness is expected, and her ears looked but she produces a lot of wax (she gets from her dad) lol. So I am going to toot my horn here a bit because yes a lot of the therapist have helped get Emmy to where she is but it's mommy & daddy that are keeping their hard work the way it should be. :) And Dr. Kappel commented on that. Yay Emmy, Mommy, and Daddy!
So since I had such a rough time with that paper at the doctors office I posted on fb and had a few comments from friends that are going through the same thing and with taking some of their advice I am going to take a look back because Emerson has made leaps and bounds. And just for MY sake I want to list them. It's hard to see improvements when your the one around all the time. So here it goes.......
2. no more "ballerina feet".
3. looser hands.
4. arms move.
5. legs move.
6. legs not in "frog" position as much.
7. left arm relaxed more.
8. rolling to each side and trying to roll back to her back.
9. taking steps in her walker.
10. A LOT more head control.
11. able to sit up unassisted for about 10 seconds (before it was none at all)
12. able to actually sit. (in hospital we had no hip rotation which prevented us from sitting)
13. following lights more
14. trying to focus in or people and toys.
That truly is a lot of improving and I knew that deep down inside but I still miss my Emerson and hope and pray to get her back one day. Please don't forget to
PUSH for Emerson!
Sunday, January 2, 2011
TwEntY-EleVEn
Ok so it's been two weeks since my last post and boy have we been busy. Let me see if I can back track at all.
Joseph had a fantastic Christmas as well he made out like a bandit! :)
One good thing we just found was a new tickle spot on Emmy! The more smiles the better for me! Also too I always put Emmy on her play mat and she likes it but the other week she just seemed so amazed by it. Also she is more relaxed. Now to most normal moms having her arm down at her side and her legs down isn't a big accomplishment but to me and other moms like me it is HUGE! Emmy has had her legs in a frog like position pretty much since we left the hospital. It wasn't constant but anytime her tone would act up her legs would push into that frog position. Well lately she hasn't been and her left arm has been coming center more and relaxed at her side more. Usually it's up in an "L" position and she moves it back and forth almost in the stroke of a hammer. But again like I said lately it's been relaxed and she seems like she's trying to control her movement with it! She's also bringing her hand center more which is excellent but she rubbing and tugging on her trach more. Uh Oh, more careful watching of her that's all. Anyway this improvement is exciting! ^ above see the one not relaxed right arm and the one relaxed left arm :)))) and her legs are down and not in froggy position!!!
So I have been nervous about Christmas and Emerson's 2nd birthday coming but it has come and gone and I couldn't be happier. Yes it was a little sad to think of all the things Emerson should be doing but if I thought about that all the time I would just be down in the dumps all the time and that would be no good. So I took Christmas and her birthday by the horns and enjoyed EVERY single minute of it as we celebrated Emerson's second year here on earth and the birth of Christ.
Well Joseph got an early Christmas present and got tickets to the Hornets game so we went and had a blast. The Hornets even scored 100 points so we got a free chicken wrap from Popeyes which I think was the highlight of my son's night. lol. That's Joseph for ya.
Emerson got soooo much for Christmas and her birthday...... She got a bean bag which is just awesome! When we put her in it, her legs were hitting the floor and her shoes have squeekies in them and when she put pressure through her legs they were squeeking away :) I jumped up looked at her and was like "oh that was Emmy" lol :)
Emmy also got A LOT of really cute clothes, jammies, and bows. She got some really cool light up toys, a "O" ring ball, a peanut ball (to use for therapy--Thanks Nan!), a pillow pet, jewerly; in fact her first set of pearls :), light up star toy, and so much more I can't even remember.
Joseph had a fantastic Christmas as well he made out like a bandit! :)
As for therapy most of the therapist cancelled due to Christmas and New Years but Hilary her PT has been coming faithfully! Not too much has changed in her therapy Emerson is still making small progress but nothing major. Emerson did Hippo Therapy once but it was closed for two weeks because of the holidays and we intend to return on Jan 8th.
Another thing this new year is bringing us is more non-conventional therapies for Emerson. I have been researching my little butt off trying to decide what therapies would benefit Emerson with the help of her Neurologist and our hospital PT Lori. So we have been looking into going to the NAPA center in Los Angles California. It is an intensive therapy that is 3 hours a day for 5 days a week for 3 weeks. It includes therapies like suit therapy, sensory integration, treadmill therapy, massage therapy, electrical muscle stimulation, gait training, alternative chiropractic therapy, auditory/vestibular therapy, and more. If you or someone you know is interested in NAPA center check it out at napacenter.org I have looked into our insurance covering it and unfortunetly they do not which means I will need to come up with about $3,000-$5,000 for Emerson to do this. I am now looking into starting up a fundrasier to get the funds, hopefully we can raise enough money to get Emerson there before May.
Crafty? I never thought I was but I am. I found on a friends blog a sensory board and it got me thinking Emmy needs one so that's just what I did. I went out and bought all sorts of stuff with different textures to put on it. Ok here's the breakdown...... The board is just a clip board and it's covered in duck tape that was zebra print, cute, I know!!! :))) And at the tope left corner is just a compact mirror. Next to that are some colored different sized fuzzy balls. Next to that is some fuzzy colored pipe cleaner. Under the mirror is a gold birthday horn thing. Then theres a slinky, a peice of sand paper, and a baloon filled with corn starch. Around the board ie, the blue flower the pink heart, and the pink butterfly are gooey sticky things (kinda like those sticky hands you get in the gumball machine). And finally there's her name with stickers that are hot pink and have glitter on them which make for a fun feel. I was so proud of myself when I made this, I honestly didn't think I would do this great of a job. But I did and it's sassy and adorable just like my Emerson Louise! <3
Oh and I have more ideas that I intend to do with my crafty side. It's just begining. lol.
So all in all this new year I hope for many blessings for my family and everyone else. We had a rough 2010 but still had things to be grateful for and we are very grateful for them. So 2011 can only be better right? I sure hope so. "Be joyful always!" And have a
Happy Blessed New Year!
Subscribe to:
Posts (Atom)