Sunday, May 8, 2011

Birthday Girl!


My angel turned 1 on May 5. Wow i cant believe that time has flew by and that shes a year old. Seems like just yesterday i just had her. We decided to have a lil cookout with just my parents, bjs mom, and his grandparents on her birthday. One of my best friends made her a huge cupcake cake. I put a candle in it and everybody sung happy birthday to her. She loved putting her hands in the chocolate and liked it on her face, but did not like the taste of chocolate. It was so cute tho. She started getting a lil fussy because people were their. She gets in those moods to where when she dont want u their she will either pretend she is aslp or just throw a fit til you leave and then smile about it. Shes so rotten. We had her birthday party yesterday. I was so worried to how she would do with so many people there but she did amazing. I was soooo proud of her. When we first got there she got a lil fussy but she was sleepy cause she didnt get her nap out. But once she took about a 45 min nap she woke up in the best mood ever. She had a surprise guest named Minnie Mouse who came to see her. When she saw Minnie, she couldnt stop smiling or staring at her. It was the cutest thing. As soon as i get my pictures back i will update them for everyone to see. The birthday party couldnt have went any better.

Then this morning we wanted to take her to church since it was mothers day. And Bjs mom, and granny and papa came with us to church. Maddie again did so completely good at church. We also all went out to eat at Ryans. She is doing so good. Couldnt be prouder. I love my baby girl. Will update pictures as soon as i get them!!!

Rest of April updates

Once again, I apologize that its been awhile since i have been on here updating about Madison. So much has went on.

Madison had been still having issues with everytime she would use the bathroom, her heart rate would drop into the 40s and 50s. I had talked to one SMA mom and she said to try putting her back on continuous feeds and to had prune juice to her food. When i did that she went 12/13 days without having a spell at all. And then all of a sudden she had them again. I contacted her dietician in Cincinnatti, and they told me a different way to mix her food. Did that and she has done really good with no spells. And then today we gave her a lil bit of miralax because she hadnt used the bathroom yet and bout a hour after giving her the miralax, she had another spell. And whn I sit back and think about it, when she had all the other spells she had had miralax. So im going to not give her any at all and see how she does.

Thursday, April 14, 2011

My happy Angel

Well we brought Madison home last Wednesday after we got our floors done and moved back in. She was so happy to be home. We did her room in pink. And we also put up her big girl bed cause she got to where she wouldnt sleep in her baby bed and plus it was getting just to hard for me to reach in and pick her up. I took her in her room for her to see it and she just lit up. Smiling like crazy. I laid her on her bed and she just giggled away. She was so happy. Every single night i put her in the bed she giggles. So needless to say i think she loves her bed. I will post pictures later of her room.

I took her today to get a xray to check her lungs. About 2/3 wks ago her right lung was a lil hazy so her pulmo changed her bipap settings and now he wanted to check and see how it looks. Lets hope and pray that they are clear. She did so good today also whn I took her to get the xray. She was a lil ill tonight but she had a big day. Anytime we take her out to the doctor she seems to be so tired for the rest of the day. Will post pictures soon.

Wednesday, April 6, 2011

March Updates

Geez, i feel so bad for not updating any sooner. Alot has went been going on. Madisons sleep study results came back and the doctor wanted to lower her bipap settings, but shes been on those settings before and they didnt work for her so her actual pulmonologist agreed with me and kept the settings the way they were except changed the epap number from 8 to 5.

Maddie started sounding a little nasaly, but her stats were looking pretty decent. O2 was staying at 98 which is pretty good. But her pulmo wanted to start her on a antibiotic just to try to prevent a cold or any nasty virus. About 4 days into taking the meds, she started having episodes to where her heartrate and oxygen would drop into the 50s and 60s and the only thing that would calm her down is her bipap. Then the next day she had 2 episodes within a 30 min time period. But most of the time she also used the bathroom right after the episode or she was strainging.  I was starting to get worried with that. We took her back to the pulmo and the dr ordered her to have a xray of her lungs. It showed her right lung was just a little hazy. So he upped her epap to 7. After he upped her settings and the antibiotic was out of her system she hasnt had anymore episodes. So im not sure if it was the antibiotic or her epap settings. Or even maybe just where she was having trouble using the bathroom. But shes doing great now. Her gastro dr said to give her pedialite and since then she doesnt seem to have any problems using the bathroom.

We decided to have our floors redone and have the carpet removed so it doesnt bother Madison, when it comes to her respiratory problems. We took her to stay at my moms while they did our floors. I have missed her soooo very much and cannot wait to get her home. We get to bring her home tomorrow (Wed) I decided i wanted to paint her bedroom pink and really fix it up with bright colors (since she loves bright colors) I cant wait for her to see it.

Madisons doctor called the other day to check and see how she was doing, and I explained to him that she is getting to where she cant be off the bipap for too long before she gets fussy and wants it back on. He upped her back up rate by 4 on her bipap settings. Im not sure if the reason she wants to stay on the bipap so much is because shes so use to not wearing it at our house and because Im not with her or if its the setttings. Since we changed the backup rate she seems to be doing ok. Thats all that i have right now. Going to head to bed so tomorrow will come and i can bring my baby home. Promise it wont be this long again when i update.

Friday, February 25, 2011

Valentines Day 2011

Sorry its been awhile since i have updated. Ive just been real busy. Madison had her first sleep study done on the 11th of Feb at UVA. She did really good on the drive there and back home. The doctor said we would hear something within a week of where her bipap settings need to change or not. Will let everybody know as soon as i know.

Madison had a great first Valentines Day. We had her pictures done a few days before Valentines and she did so great. Shes been in such a great mood. She got a bunch of goodies for V-Day. Here are a few of her Valentines Pictures.

Madison has been doin really good except her heart rate has been staying anywhere from 140s-190s. Normally it ranges 120-140s. Shes not acting no different, shes been in a great mood everyday, not fussy, and no fever or congestion. So we have a appt for her tomorrow with her pulmo. We are praying its nothing serious. It could just be where shes teething. But we should have a idea tomorrow. We had a lil scare tonight. Bj was getting ready to carry her to her room and get ready for bed, and she started throwing a fit and then her oxygen and heart rate started dropping and she was turning real pale. Immediately tried the cough assist but that wasnt working so thn i put her bipap on, and after 10 mins her stats were back to normal. Not sure what caused it if it was just her not wanting to go to bed or she was mad because i cut her Mickey Mouse playhouse off. But shes good now and sleeping so soundly. Will update sometime tomorrow after her appt.

Wednesday, January 26, 2011

Our First Scare

Sorry I havent updated the blog in a few weeks. Things have been really hectic. We had a scare with Madison on Jan. 14. I had an appt in Danville that day so my mom watched her so i could go. Madison had physical therapy that day at 1. While i was gone, Madison was in the middle of her treatments and she got really junky. My mom tried suctioning her but it just wasnt clearing up. Then all of a sudden she turned gray and went limp and stopped breathing. My mom immediately started CPR. In the process of my mom doing that the therapist called 911. Soon as Madison started breathing again, my mom went and put her straight on her bipap and hooked her up to oxygen. The ambulance got there within 10 mins of the call. They took her to Martinsville Memorial Hospital. I met them there. She was really fussy so Bj went home and got her bipap and brought it back to the hospital. Soon as i put it on her she was very content and took a nap. They did a xray and xray showed her right lung collapsed again. I didnt feel comfortable taking her back home so i felt she needed to be in the hospital in case she had another episode. Roanoke didnt have any beds available so they transported her to Brenners Childrens Hospital at Baptist. Once we got there we got her settled. The next morning they did a xray and it showed her lung was back inflated.

I am so thankful for my mom. I know God was with her that day because she hasnt had CPR in over 30 years and when Madison stopped breathing she all of a sudden knew what to do. God healed Madison. For her xray to show that her lung was collapsed one night and then the next morning its back inflated. God healed her lung.

We got to come home from the hospital on Jan. 15. Madison is doing really good now. We are just more cautious about everything with her. I do her therapy 3 times a day. She stays on her bipap for 2 hours then off for 2 hours throughout the day. I suction her atleast every 5-10 mins to make sure i get all her secretions that i can get. Anything i have to do to prevent her from what happened a few weeks ago im going to do.

Friday, January 7, 2011

New Years Day

Wow, I cant believe Bj and I have been married for 5 years. Where does time go? My parents came over last night and watched Madison so we could go out to eat and celebrate. It was really nice gettn out just the 2 of us.

Madison has started going through a stage where she doesnt want to sleep at night. She wants to play instead. But thats perfectly fine with me. I just love spending all day everyday with her and watching how much she changes everyday. I have started putting her to bed around 9-930 now and she falls right to sleep and doesnt wake up. So maybe she just didnt want to go to bed at 8 every night like before. Lets just hope it doesnt get any later than 9-930. LOL.

Today has been a very relaxing day. Just sat at home all day spending time with Bj and Madison. Shes been a lil fussy the past few days but i believe its just where she wants attention. Cause as soon as u start talking to her or pick her up she starts smiling. I believe shes going to have my attitude. (oh lord, watch out) lol. She cant stand it if you are not paying her any attention.

After doing her treatments at 9 i put her back on her bipap and she fell right to sleep. Then about 20 mins later the alarm on the bipap started going off. I went to check and see why and the whole entire machine was off and wouldnt come back on. Of course i panicked because i had no clue what was wrong with it. But i called to Advanced Home Care and the guy brought us a new one. Now she is completely happy and sound asleep.

Well here are a few pictures from the past week. Hope u enjoy!!!

I absolutely just love her blue eyes. And them long eyelashes

Sound asleep after her bath. Way to cute. Love her to pieces

Madison has been really going through a stage where shes not wanting to go to sleep at night. She will sleep for about an hour and then wide awake. I dont know if its just something shes going through or if her bipap settings need to be adjusted.

I called Madisons pulmonologist today He cant really adjust it to high right now until she has a sleep study done. That will tell him exactly what her settings should be. Im hoping we can get it done before we have to go back to Cincinnati Childrens Hospital to see the doctors there. 

Madison has started talking a little more. Its not words you can understand but you just know shes trying so hard to talk. Im hoping i hear mama but its ok if i dont as long as shes doing good.

We took her today to have her fitted for her AFO's. We chose to have them done in pink since she seems to love that color. Shes such a girly girl. She has a fit if i take her hair bow out of her hair. I have to hook it to her bipap when she naps just so she thinks shes still wearing it. She is so spoiled.