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!

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!

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.