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.

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.

Christmas Day

MERRY CHRISTMAS EVERYBODY!!! So excited about this being Madisons first Christmas. Madison had a very good but busy and tiring Christmas. We had my family come for lunch and BJs family and my parents and a few friends come at 6 for dinner.

Santa Claus was very good to Maddie. Her eyes just lit up when she seen all her presents sitting out for her. She got lots of books, which she loves to be read too. She got alot of Mickey Mouse and Minnie Mouse dolls, and a few outfits. Bj bought Madison her first dallas cowboys book and pair of socks. She loves them. After helping her open her presents, she was sooo wore out and just fell asleep. Heres a few pictures of Christmas Day.

Will post a few more as soon as i get them loaded to computer.

 Waiting for family to get to our house for Christmas

 She got a little to impatient while waiting. lol

Starting to calm down since everybody was here.

Christmas Eve

This morning started out really good. After doing alot more research last night about respiratory care for SMA kids i decided to start doing exactly what they said to do. First we did her chest pt, then did her cough assist, suctioned her and then tried her with the postural drain. After 25 mins of doing the drain i started all over again with the chest pt, cough assist and suction. Madison doesnt like the cough assist at all but i try to tell her what a good job shes doing and how its helping her every time so maybe soon she will realize its helping her and do better with it. I got alot of secretions out of her. Which is a good thing.

Madison watched her favorite cartoon for about 2 hours then she started getting tired and fussy so i put her back on her bipap and now shes sound asleep. She absolutely loves her bipap. Which is a good thing. I guess she know that it is helping her rest.

We are looking forward to tonight when we make Santa some cookies and put them out for him along with some milk. I will definitely post pictures as soon as we get them done and put out for good ole Santa. Check back later for more updates about Maddie.

Here are a few pictures from this morning that I took and just now being able to post.

           Maddie with her reindeer outfit and her pink bow

Daddy and Miss Maddie

          Getting ready to take a nap. She just had to have her pink bow still on her.

Madison absolutely loved making sugar cookies for Santa. Definitely going to make this a tradition every year. Here are some photos of her making cookies along with trying to eat them. She is such a mess. lol.

Madison sure was exhausted after making sugar cookies and trying to eat them.

Another tradition that i want to start with her on Christmas Eve is reading her the book, 'The Night Before Christmas." So i bought her the book a few weeks ago and i read it to her tonight and she LOVED it. So yes, we will do this every Christmas.

I also bought Maddie a headband with Rudolph on it and his nose lights up and she loved it.

Well it sure has been a long busy day today but a really good one. Madison did so good with her treatments. She didnt cry when i did her cough assit. This makes the 3rd time that she hasnt cried. Im so proud of my baby girl. Now its time to set all her presents up for when she wakes up so she can see what Santa brought her. Merry Christmas everyone!!!!



Madisons First Christmas Pictures

Its so hard to believe that Christmas is in 2 days. And that my baby girl is almost 8 months old. Where did time go??? I so cant wait for her to see what all santa brought for her. Im just so glad that shes home from the hospital. And that shes feeling so much better.

We had a photographer come to our home to take Madisons Christmas pictures. We didnt want to risk taking her out in the cold weather and her getting sick again. The pictures turned out great. Hope you enjoy them.

          Madison pushing her tongue against the bottom of her mouth trying not to smile

            Just love her blue eyes being enhanced here

                 Madisons first Christmas present from God

                    Daddys girl

                    Mommy angel

                     My lil Maddie Cakes

           She just melts her papas heart ( my dad)

       Maddie and her Granny J (BJs granny)

       Maddie and her Nanny Martha (BJs mom)

                                             
         Maddie staring at her boyfriend Teagan

    Maddie smiling at her great grandpa (My grandparents)

                             Mamas angel

                              Mommy and Daddy

             Maddie with her Mamaw and Papaw Roberts (BJs grandparents)

     Maddie with her Granny J and Papa Red (BJs grandparents)

              Maddie with her Granny D (my mom)

I will have more posted from Christmas once Christmas gets here. ( 2 days)