Friday, January 30, 2009

no up no down

Not much has changed. Brody is not getting worse...but he is not getting better either. Due to his lower muscle tone his immune system has a higher risk of letting infection in...and a harder time fighting it off. The infection has hit HARD and Brody is fighting like a trained UFC pro. We are not getting much sleep which is difficult because Brody really just wants to rest. He keeps looking at me like "mom are you kidding...why are we awake!?" I have decided that our current pulmonologist is too busy to worry for Brody so I have contacted another Dr. who may have more time to work with my cornbread (we are calling him that today because I miss Bryce so grossly bad). A nurse from the pediatric floor uttered the words "chronic respiratory issues" and I have decided to take that phrase for the seriousness that it is. I want him looked at more closely and I feel that his current plan of recovery may need some changes. They have taken him off the albuterol because (as I already told them) it was not doing any good. We are now receiving saline treatments every 3 hours and still some good suctioning. Lots of secretions still. I have stepped away while they are finding a new place for his 3rd IV...cornbread was not interested in having the first two so he just ripped them out. I have to say his persistence is admirable and his strenghth is straight from God.
Thank you to all of you who have us in your prayers. We are so thankful for the beautiful friends and family who have been loving on us during this difficult time. Extra prayers for Nana too...the poor thing has been having to play football with Bryce for a few days now!

Thursday, January 29, 2009

oh picu

Unfortunately we are being moved to the PICU. We were praying hard that this would not happen, but they want to keep a closer eye on muffin. He is still on full oxygen and his saturations are getting better, however his CO2 levels are going up due to the strain in his bronchial tubes (caused by RSV) and this is not a good thing. He is just working too hard. They have moved the breathing treatments to every 2 hours now and have asked me to slow feedings to reduce the chance of aspiration. We are still waiting for the respiratory/lung specialist to come and see if she would like to take a different approach to his recovery. I absolutely hope so since we are not improving. Muffin ripped out his IV on his foot last night so they had to come redo that on his hand. A team from the NICU came up to do it and I think they were just born to do IV's because it only took one poke. Praise God for that.
Being with Muffin in the hospital again is very different than last time. I am much more comfortable with the situation, however its much harder on an emotional level. Last time he was just this helpless little man that came out of my tummy and I loved him so much, but was not sure why yet. Now I "know" him...he is my little man and I need him to heal quickly. He shot me a quick and TOTALLY fake smile this morning...he takes after me and can put on a front :) I appreciated it because it warmed my heart and now I will pray hard that we get some real deal smiles ASAP.
I am heartbroken that I am missing Bryce's first field trip today. His class is going to McDonalds and I am just so bummed to miss out. I miss him sooooo much I can't even stand it! He called last night and asked to speak to Brody's doctor. Fortunately for Brody's doctor he was not nearby or he probably would have been given the 3rd degree on why "his baby" is not home yet :) Bryce is pretty demanding and I absolutely LOVE it!
Thanks to all my beautiful friends with God and Love in your hearts. Please keep praying and thank you for keeping me strong during this time. We def. having some communication struggles with the outside world, but we will keep in touch as best as possible. We are in the PICU now and will be praying hard for a quick return back upstairs. Love to all...

Wednesday, January 28, 2009

pnasty pneumonia

So....we have now been in the hospital with Brody for a little over 24 hours and it does not appear that we will be leaving anytime soon. After skipping two feedings I knew immediately that something was wrong with my muffin. Oh that reminds me...Bryce has decided that he does not really like "Muffin" he has decided that he prefers to call him "Cornbread" for the humor of this slightly depressing post I will refer to my muffin as cornbread. Thank you Bryce. Brody has pneumonia (which is officially the ugliest spelled word in the world) in one of his lobes. He is being given antibiotics through an IV along with a steroid for inflammation, flonase and xopenex breathing treatments every 3 hours followed by the baby booger sucker. He has really been tolerating his feeds well today which is such a blessing for his strength. He is currently on a very high amount of oxygen and will stay that way until he proves that he can be weaned. Cornbread is having to work SOOO hard just to breath and it really wears him out. His weezing is absolutely heartbreaking. Our man is still trucking we all know he is part superman. God created such a little fighter! I gave him a bath today and he felt like a brand new man. He even requested that I style his hair in case any of the nurses happened to be cute.
We had quite a long night due to an innapropriate roomate that shared entirely too much personal information with me. After realizing that it was quite possible she was completely INSANE, I requested a new room and we are "breathing easier" now. As much as I am sorry for her pill addiction and extreme need to cut herself....I think we were better off getting away and "sleeping" next to some normal folks.
Thank you so much for all your love and support. Keep praying for his recovery because we are ready to go HOME. Being here brings back so many memories...both scary and good. I know he is in great care...but more than anything he is in great HANDS!

Monday, January 26, 2009

stinky success

We are working on the no hands thing
Pass it to ME dad!

We are Awesome

Thanks for the cute outfit Amanda!

So just a small update on a few things. We have really been working hard with Brody on strengthening muscles and finding his feet! The exercises we do involve lots of leg movement which is so good for our little man. He really enjoys them and laughs the whole time...and this is mostly because it helps him relieve gas! When we pull his knees up to his chest we always hear a toot toot toot and then a bunch of giggles from him and Bryce. Big brother thinks its so hilarious that his baby toots in my face. Bryce is really into soccer these days. I have signed him up at the YMCA and he will start playing in March. He slept with his shin guards on last night....such dedication. My muffin and my macaroni keep growing each day and I just can't get enough!

Friday, January 23, 2009

oh boys

So getting Brody's picture taken was a success! I took him to Potrait Innovations and to Justin's surprise...I did not break the bank :) He did really good, he was completely engaged and aware of his surroundings and we even got a picture mid-laugh. I am trying to figure out how to work the scanner so I can post the pics soon. Brody had his OT appointment with the amazing Mandy this week and that went really well. She was really impressed with his muscle control and could tell we had been practicing our exercises. We will continue to work on his flexion and bringing his arms and legs in towards his chest. He showed off how he can scoot across his play mat on his belly, roll over and grab his toys and put them in his mouth. She really wants us to make him aware of his eventhough Justin thinks its rude...we have been pulling his feet towards his face! Eventually he will grab on to them and realize he has his very own toys available to him at all times! Bryce has been learning about opposites and nocturnal animals. Sometimes I think he is smarter than I am....well he thinks so anyways.
We are continuing to embrace this new adventure of "life in boerne" and it gets better everyday.

Friday, January 16, 2009

normal needs

I have started to think about the phrase "Special Needs Child"...the definition for this is a child who has specific emotional and medical needs due to physical conditions, genetic conditions, abuse or neglect and so on. SO I have decided that ALL children are special needs and I do not like that other definition at all. One day I will have to create my own dictionary with all the new meanings for words I have made up…sorry Webster. God made all children equally different. He handcrafted each one to his pristine expectations...He wanted some of them to be picky eaters, He wanted some of them to wake up all night, some to need surgery or special medications, He wanted some of them to cry more than others, some to have trouble reading or not like to share. He created children who have trouble hearing and children who are allergic to milk. Some kids are whinier then others and some only eat cheese. Some kids hit their friends and some kids have a hard time potty training. Some kids are born missing vital organs or with an extra finger. Our Lord did not "mess up" or make a mistake...he simply wanted them that way. To me...ALL children are special needs. They all need us in their own special way. They all need our love and care and attention. Bryce walked when he was 8 months old...but he did not talk until he was 2. He had some issues with his hearing and sometimes he goes a whole day with only eating cereal and cheese sticks. So both my children need my in their own "special" way. I love noticing the differences in all the kids we meet. They are all so beautiful and SPECIAL. We should be more careful about passing judgment on kids that look or act different than our own.

Monday, January 12, 2009

reflections and perfections

Motherhood has made me a person that I did not know. It has brought out a side of me that I did not recognize. I am a more calm, loving, faithful and gracious person. Being a mom has allowed me to reflect on the person I chose to be and the person I have been and the people I will pray for my children to become. Being a mom was part of God's plan for me and I am so thankful for his gifts. God has a plan for everyone whether it be parenthood or not and either way its a glorious plan. Every person has a story and not one single persons story or path is clear of bumps. When I feel overwhelmed or exhausted I remind myself to embrace these moments in life that appear to be difficult. I have to remember that these instances are actually blessings. That as some days feel more difficult than others (and longer!)...we really have to cherish them because they will be over soon. Bad days end and so do good days. If we focus too hard on the tough stuff...then the good stuff is going to fly out of our hands before we have had time to treasure it. Perfection is a word or idea that is up to each individuals interpretation. After giving birth to Brody I had to struggle with that word. I mourned the loss of my "perfect" child and prepared for a life with a child who would have social and mental disadvantages. BUT after bringing him home and getting to know him...I realized he IS perfect. Absolutely and most wonderfully PERFECT. God created him for me and I could just not imagine him any other way! I adore the way his tongue pokes out because it is a little long for his mouth. I admire his fight and determination to heal quickly and feed well even when the doctors said he would not. The quirkiness of his missing line on his pinky finger is so miraculous to me. God creates us all so beautifully...and he did not stray while creating Brody. My children are MY portrait of perfection

Saturday, January 10, 2009

pictures and prayers

Trying to get a picture of his smile!
still trying...maybe I need a faster camera!

muffin man's breathing treatment :(

Big Brother was taking care of his baby at the doctor!

My football boys!
So I just want to thank everyone for all the prayers. I have asked everyone I know to pray for my mom and I could not be more pleased with the response. Please continue your prayers for her healing and strength and most importantly her medical treatment. It is so unfair that the people in our country can be sent home to die. She has blessed so many lives in her path, created homes and love for people who did not have it. She is a mother to hundreds of people and gave laughter to even more. We are still waiting on any information about her treatment...
Now, our God, we give you thanks and praise your glorious name.

Wednesday, January 7, 2009

preschool, i love you

It was truly fabulous that preschool started up again yesterday! I love my little man so much, but I also enjoy my five hours away from him on Tuesdays and Thursdays :) I cannot lie...I am also looking forward to when Brody starts preschool...what will I do with that FREE time? Probably go to the grocery store like a loser lol BUT what bliss to walk the aisles of the grocery store child free. Bryce had a great first day back and apparently really enjoyed the visit from the "zoo man" who brought a kangaroo, a snake and a "porklypine"! Today we are laying low...Brody sounds a little congested so I am trying to keep a close eye on his feedings and temp to see if he needs to see the pediatrician. He is his usual happy self...but he just sounds a little snorty today. His OT will come this afternoon so we are excited about that. He is SO close to rolling from his back to his belly and I can't wait to show that off to her. I am debating on the nightmare of family portraits. I cannot decide where to go and what time of day is best. I have done Picture People and JC Penney and they were both great but somehow I end of leaving with 400 pictures too many and I know people love my kids, but no matter how much they love them I dont know anyone who wants 30 poses each of them. Hopefully wherever and whatever I decide...they will cooperate.
Speaking of cooperation I just have to reach out and thank the people in my life who have made difficult times a little more warm for me. I have been through some things recently that at times there were no right words to console...but there were friends who tried to say them anyways. There are friends that know things are different for us right now but they stick by our side no matter what. I have let a few friends go recently (and I know that sounds super corny-licious) and I dont think I will ever look back. I cannot compromise my values just to stay friends with someone...I cannot devalue my own beliefs to make a friend feel better time and time again. Personal morals are not supposed to be bargained with...especially just to benefit someone else. Lying is one thing...but lying to yourself is the ultimate betrayal.

Monday, January 5, 2009


I am thrilled to say that preschool starts back up tomorrow. I loved having all the lazy time and snuggle time and holiday hustle/bustle time this past two weeks...but I am just beside myself that our "routine" starts back up tomorrow morning at 8am sharp! Bryce charmed me today while exclaiming that the pizza we had just made from scratch was "fantastic!" this is def. a new word to his vocabulary...its one of the ones he got from me along with rude, super and great! Justin also adds to his example of his most recent Justin phrase is to tell me "stop trippin' mom" And no that was not an attempt at humor...
Our calendar is back in action...lots of therapy this week and a doctors appointment as well...hopefully even a hair appointment for thursday. Brody is getting better and better at managing his neck control. Kids with Downs overall have very low muscle tone...some do not walk until the ages of 3-5 BUT our man Brody is showing quick signs of gaining muscle control and really loves his tummy time. He is rolling more frequently now and is doing well in the bumbo chair. I am trying not to overwork him until we have our next cardiologist appointment...but he seems to be doing great. We meet with his OT on Wednesday afternoon and I am looking forward to see what she has to say. I ran into our case manager from the NICU today and it made me so proud to be able to show Brody off. He has come great lengths since she saw him last. She helped us in so many ways and provided us with so much valuable information. I just could not have made it with some of the resources the NICU had to offer. We were truly blessed by the experience to have such great people touch our lives. God has a plan for us and I appreciate his plan more and more each day.

Saturday, January 3, 2009

mickey mouse and bills

Thats "Mr. Muffin" to you
Yay...I like you today!

I think Mickey Mouse Clubhouse is my favorite Saturday morning cartoon. It is one of the only ones that does not make my hair hurt. I only mention this because I feel that Disney is on my side this morning and playing it on repeat. Thanks guys. ha. Cartoons and TV bring me to some of those other mommy decisions. Do I allow my son to watch sponge bob and those other dirty cartoons that talk about throwing up in your face and farting on your leg?Uh NO...and may I please ask when cartoon characters got such a 'tude? Like who took an adorable colorful crayon and colored a cutesy creature that can say stupid head and lizard butt? RUDE! So we stick to the Sprout Channel and a great channel called Boom (although not ALL shows on this one are approp.) This also leads me to feeding Bryce. This has become a major project in my household. I mean he just cannot survive on cheese, applesauce and tomatoes! Although these snacks are not bad for him...he needs some meat in his life. And SORRY but bologna does not count as meat lol. It is a work in progress....
A new year and a new start. I am getting organized and finally paying some medical bills. My bank account gets so sad when I start writing checks out to Dr. Cut Your Tummy, Dr. Saved Your Life, Dr. Didn't Do Much and Dr. Heart Throb. Really, I hear cries from my check book. I would much rather be sticking that money in college funds for Bryce or school and therapy funds for Brody. I would rather take the boys on a fun trip or you know...just about anything else. 32 days of NICU care in three different hospitals...two ambulance rides to transfer him to each...a surgery that fused two organs and removed and night care...some extreme jaundice treatment that turned Brody several interesting feeding, nose feeding, belly sucking....AND God only knows what else is NOT cheap. The truth is I would have given my legs, my heart, my soul, my home, my car, my everything to treat my little precious baby. I would have given it all just to be able to have him home and smile at me the way he does. For some reason every once in awhile I get off track and feel like financially its made out to be a punishment. However, I get my little tootie back on track and remember that God gave me this gift and He made him just as he wanted him. We are so blessed that we live in a world where all of Brody's issues could be taken care matter the cost. The first few days of "mourning" the loss of our "perfect" child were difficult and scary. And the next days were nothing but pure bliss. I did get a perfect perfect. It just took me a minute to realize it. I would not change one thing about Brody. NOTHING.