Thursday, September 23, 2010

I give God all the praise and Glory!

So last Thursday was the begining talk about Emerson possibly getting her trach removed before we go home. So the first step was to give her a smaller trach so we did and she is doing wonderful with it a week later.

Friday September 17th she was put into a walker and did really well with it. She is picking up her right leg well and trying with her left. She is also able to support herself with her left leg and is trying with her right but it buckles at her knee. But overall she is doing really well with trying to walk. Emerson also got in a beanbag swing and was okay with it. lol. She also got in a ball pit with Mrs. Leslie and was not happy at first but really started to enjoy it after a little bit. 

This week (9/20-9/23) Emerson is still doing well with drinking out of a cup and is doing soooo amazing at trying to hold her head up. She has so much more control with bringing her head center and back and front and is holding it up in the center much longer she even sometimes moves her head while still keeping control of it. :) Emerson also got put in this neat little contraption, it's a treadmill that she walks on but is put in a harness to help her hold herself up. She did okay with that. Emerson also made it in the bulletin board at the hospital, proud mommy! This week they have also been messing a lot with her meds and feeds to get them right for when we go home. She was completly off of her propanolol but on Tuesday night we realized that she had a bladder infection which caused her heart rate to go up which is typical when someones in pain. So they put her back on the propanolol once a day which is to help regulate her bp, body temp, and heart rate. Emerson was also given neurotin for her seizures but after a couple of days it wasn't really working too well so just Tuesday they added keppra (sp?) which is to help her with seizures, So far with a full days dose in her I do not see much a difference and the Dr. said that it takes a couple of days to really see a difference. So we'll see. I just pray that she stops having the seizures completly.

Tonight Thursday September 23 Emerson gave us a scare though, she stopped breathing on three seperate occasions. It was very scary, my hands and legs never shaked so much and my mom says that I was white as a ghost. What happened was that Emerson gets a breathing treatment and her trach suctioned every four hours and her last treatment and suction was at 12 noon and she was due for one at 4 pm but she didn't sound junky like she needed to be suctioned so we went ahead and went to the thearpy renunion party they had for old and new thearpy patients. We got back to our room Emerson fell asleep and respirtory was on their way to do what they needed to do when her apnea monitor read zero for her respiration and one hundred and something for her heart rate (I didn't look too closely). So I yelled for the nurses and she wasn't blue or anything but was gasping for air when they came in and this happened two other times her monitor would go off her belly wasn't moving and then she'd gasp for air. So they bagged her and suctioned her, gave her her breathing treatment, and all the while she was still sleeping, so we woke her up, suctioned her, did CPT on her, and suctioned her again. And she seemed fine after that. The respirtory thearpist said that she had a lot of thick mucus and got a mucus plug out when she suctioned her so that is why they believe that it was just from that. Also too because they did a blood gas on her and it was fine and her xray was fine as well. The Dr. did however tell me that when you have a plug your carbon dioxide that you breath in can make you "intoxicated" just like alochol and can mess with your brain with how you breath. So yes this all happened because she had a plug.

On a better note this week Emerson has been able to tolerate her speaking valve ALL DAY! except for when she's sleeping. This is another big step to getting her trach out, so Emerson won't have her trach forever. Also too different things I have been noticing is that she moves her legs and arms a lot more. She can wiggle her body too! She gets goosebumps now, she has tears now when she's really crying, and her chin chatters when she's cold. I know these sound like normal simple things, but I haven't seen my baby do this in three months and slowly everyday God is blessing her and she's gaining little things back. Gosh I can't say enough how blessed I am and how thankful I am for God's work on my baby! :)

I will post pictures sometime this weekend of all of her progress! :) Please contine to P.U.S.H for Emerson (P.ray U.ntil S.he's H.ealed)

Thursday, September 16, 2010

I believe God!

So I said in the previous post that I would post pictures of her mic-key button so here it is. ------>

Okay so on Monday Emerson was completly dropped off of her zantac which was used to prevent her from getting ulcers in her stomach. She was also dropped to 2x's a day dose of her propanolol which is used to control her blood pressure, she was also dropped to 1.2 mg of vallium and she was at 2.0 mg. Yay!
In speech Emerson was still swallowing well and pushing the big stop light button when asked to. In physical thearpy she's holding up her head really well with no support whatsoever! So can bring it from the front to the center but not quite yet from back to the center, but she sure is trying! :) In occupational since she is doing so well in speech with the button Leslie decided to try getting her to push this globe looking ball, knocking down a rain maker, and pushing this turny thing when asked, and she did. So overall Monday was a terrific day! 

So Tuesday Emerson began another thearpy, music. She did really well in it and loves to hear singing and music. Emerson really enjoying trying to move her heavy feet with the bells on them! :)
Wednesday I finally got the EEG results and it shows that she has seizures. It is a bummer to hear but at least they only last for one to two seconds, yes seconds and only her eyes flutter up and down. She is on some medicine called neurotin to help control them. She can grow out of these seizures which is what I am praying for!

Thursday Emerson went on her first outting outside the hospital! It was big for her and I. I was a nervous wreck, but it all went very smooth and she loved it! As soon as we walked in and she heard/saw the waterfall and the BIG HUGE shark thing above her, her eyes got big and she moved BOTH her arms rapidly! It was quite a site to see! :) She also loved the peguins! Here are a few pictures of the outing, didn't get any really good ones nor much of her or me, my mom, and the two hospital workers who came with us only because I was such a wreck making sure she was ok. Next outting I PROMISE i'll get plenty more pictures. :)

Also too Emerson got her first sip of apple juice today and did phenomenal! No aspirating, no coughing and had a nice seal around her cup! :) GEAUX EMMY! 

Friday, September 10, 2010

So much has happened!

Ok first let me start off by saying "wow, those two weeks went by fast and I am sorry I haven't updated, and I am sorry that this will be a pretty long post."

Ok so I left off with Emerson having a swallow study done and she did, It was done on Tuesday August 31, 2010. Her swallow study went perfect. She did wonderful with it and it was quite a neat experience. It literaly showed her food on her tounge and see her swallow and run down to her stomach. It's pretty darn neat.

Emerson also got her right cast off and she is at 90 degrees! So both of her feet are out of her casts and in their AFO's and tennis shoes! :) Emerson also stood up (with help) for the first time today. Her left leg was pretty strong but her right leg buckled a few times. But it was to be expected since she just got the cast off that morning. In occupational thearpy Leslie tried putting Emerson over a ball to stretch her back BUUUTttttT Emerson did NOT like it! We also began practicing spreading out our fingers to touch things like a piano, ball, or toy. She also sat up today with help and her back is soooo straight it's amazing!

Also too my brother and his wife welcomed a baby boy! Welcome to the world Luke Icarus Bosworth! Born 6 pounds 3 ounces and 19 inches long! :)
Cousins: Britten Jr. & Luke

On Wednesday September 1, 2010 Emerson was put in a stander for the first time. She did pretty good. She also opened and closed her fingers on some wind chimes when asked to touch them. In occupational Leslie practiced reaching and grabbing for things. In speech Emerson got some rice cerel with her baby food. Below is a video of her eating. enjoy!

Friday September 3, 2010 Emerson smiled at us again 4 times after her afternoon thearpy and again at 10:00pm we got 2 more smiles from her! :)
In occupational thearpy she worked on head control and reaching but mostly she slept through her thearpy... lol. In physical thearpy Lori worked on her head control and had her in the stander again. In speech she ate really good. She was also introduced to bubbles and when one landed on her arm it startled her. This weekend of Sept 3-6 was the first weekend we were able to feed Emerson baby food! :)

Now on to this week Tuesday September 7, 2010 in speech Emerson began having neuromusclar electrical stimulation. It is electrodes put under her chin and mini amps are shoked to her chin and it's suppose to stimulate the sucking, swallowing, chewing refluxes. So she began at 1.5 amps and responded really well to it. In the above video was Emerson begining out with baby food below is her now. Again enjoy!

Wednesday September 8, 2010 Emerson had no thearpy because she has a broncoscope (sp?) done. First of all a broncoscope is a scope used to go down the trachea and into the lungs to retrieve some secreations to see if she's asperating anything. The reason they did this test was because for about a week now Emerson has been wheezing and or gurgaling. So to be on the safe side since she is now eating baby food they wanted this procudure done. Well the results are back and she is not asperating, which is wonderful news. So most likely with the amount of asthma in her family history she may be devoloping asthma, but they are unable to diagnose her with that just yet because you have to have several episodes before it can be diagnosed. Now this was concered an outpatient procudure and Emerson had to have anestesia and an IV. Now Emerson has had several procudures involving anestesia and IV's since she's been hospitalized but this one was different because she and her body actually responded to the fact that she has a procudure done. What I mean is on previous procudures when she was in the recovery room and we got to go see her it was like she just woke up from a sleep and she was fine no reaction no crying no nothing. It always bothered me but no one else seemed bothered. Well with this procudure she was shaking from the anestesia got a small fever that was controlled by mortrin and was crying. I was sooooo excited because that means that that is a part of her brain that is working that potentially wasn't working before! Amen! Thank you God! :) Just had to share that with everyone because it's soooo wonderful! Also too again Emerson has had her fair share of IV's and they have all been flushed (putting fluid through to see if it hasn't collasped) but she never really reacted to it. Well when they went to flush her IV that was on her foot she felt it and it made my day also too when it was time for the IV to come out she pulled her foot away several times when they were pulling the tape! WooHoo!!! God is good!

Now on September 9, 2010 First off Go Saints! Emerson got an EEG because she has been doing these eye flutterings with a jerk movement of her left arm and some of the thearpist think that it may be seizures, so this was done to try and catch one in action or to just look at the brainwaves and see if she's having any or has the potential for having them. As of yet there are no results back from this but I promise as soon as I do get the results they will be posted. But Emerson had an EEG done on July 7th and I was in there for that one as well, well her brain activity was there but it was very very very slow. I was worried and asked and the doctor confirmed that yes it was very slow and not normal. Well I was in there again for this EEG and I noticed that these brain waves were must faster and bigger and constant. So regardless that was a wonderful sign to me! Again God is good!!!!
In speech that day Emerson got more mini amps with the neuromuscular electrical stimulation. She was bumped up to 2.5 min amps and it was left on for 30 minutes. And we have also noticed that she is trying to chew!

Friday September 10, 2010 in speech we are definitly noticing more tounge movement and louder quicker smacking and swallowing. And we are also not needing to "sweep" her cheeks as much. (sweeping is going inside her cheeks to get excess food that she can't remove herself) Emerson was also given a big orange button that lit up and made sound and she followed it very well and is now moving her head with her eye movement. She also pushed the button several x's. Video below. 
In physical thearpy Emmy got fitted for her wheelchair/stroller to take home and it takes about 3 months to come in. In occupational thearpy she smelled garlic powder and cinnimon but we didn't get too much of a reaction to either. But she was given a ball like a globe and was able to push it down about three times when asked. Also too Emerson got a mic-key button. I'll post pictures of that soon. Below are some videos of Emerson with her speaking valve and you can hear her crying really well. Enjoy! :)