Mason's Miracles

Hey, I'm sooooo sorry it has taken this long to update my blog. The past two months have been a blur. I started my full time job with the Florida Virtual School. (love it) I've been going to several trainings in Orlando. We found a house and closed in 21 days and have been moving this past week. Needless to say between the house, working and Mason my plate has been overflowing. I appreciate all the sweet comments I've been getting curious about Mason. That means so much to us and I promise I'm back and will update frequently. :) Mason is doing great. So many amazing miracles God has given us. The one that we are most excited about is he now weighs 20 pounds. Thank you Lord. I didn't think we would break in to the two's but he did it. He's doing better with keeping solid foods down. He takes an ounce or two by bottle. The majority of his feedings are with his tube but we're making great progress. The other exciting thing is he sat by himself for 30 seconds at therapy. Yipeeeeee!!!! Of course we were crying, taking pics and he just looked at the three of us like we were crazy and he didn't understand why we were being so dramatic. I couldn't believe it. This is the one thing that I have prayed that God would allow him to do. Being able to sit and play is my dream and so I'm waiting patiently for that day but until then I'm content with 30 seconds. He is starting to say DaDa and MaMa a little. He tries so hard to talk and moves his mouth. He is growing up and we couldn't be more proud of his accomplishments.
Those of you who do not live around us, we moved back to Pinellas County. This has made a huge impact on our lives. It used to take us an hour to get to therapy and an hour back. Now it takes 8 min. Church only takes 15 and our pediatrician is 5 min. away. I was explaining this to a friend. It blows me away when God makes a path so straight and clear that you know no one could have done that except HIM. I don't know why that catches me off guard. God is constantly blessing our lives but I love when I look at a situation and know for a fact only God could have done that 100%. We love our home and we are forever grateful to be closer to our friends. I know there is more to tell you. I don't want to put it all on one blog. I promise to continue to update. Until then we will celebrate God's amazing Miracles and thank him for his goodness.
Love you all, Wendy

Look at me I'm sitting for the first time. Thank you Lord for Miracles!!!

Great Updates on Mason

We have been enjoying the last few weeks back at home and getting life back to normal. Mason is doing Awesome!!! The apnea monitor has not gone off once since we've been home. We are confident that we will be able to return it soon. He has started eating small amounts of pureed food and drinking an ounce or two from the bottle. He is still getting the majority of his feeds from his Gtube. We received great news the week we came home. Mason's wheelchair was in and ready to be delivered. I have posted pics of his new ride a couple posts down. We love it. It has changed his world. He is finally able to see life from a sitting position.


We went to see the neurologist today. Mason has gained back all the weight he lost and continues to get taller. She did diagnose him with cerebral palsy. We have known that this was probably going to be added to his list and we're fine with it. Doesn't really change anything just gives his tone an official name. He has been able to go back to therapy and is doing great. We're so grateful for God's protection over his life. I continue to stand in awe at the blessings He gives our family. This past Sat. Kevin and I took Mason for his first carousel ride. I stood like a proud mama and took about 50 pics. It was one of the first "normal" things we've been able to do with him. As I watched he and Kevin smile and laugh, I thanked God for my life. Even with the ups and downs I wouldn't change it. It's through all those times I see the hand of God in a personal way. I know if my life were different I wouldn't appreciate the small things that I so often forget. So I stand humbled that I get to experience life next to Him. When we see life through God's fingerprint, we realize just how big it is. Thank you for riding this journey with us. Enjoy the many pictures below.

Warning!!! The pics you are about to view are a bit disturbing!!

Kevin entered a dodgeball tournament w/ some of his buddies. The tournament was for charity and they had a great time getting into character. (Maybe a little too much fun:) ) They took this very seriously and practiced the weekend before. Sad to say they got out in the first round however there costumes made the newspaper. Mason is a lucky kid to have a dad that is EXTREMELY confident in who he is as a man. :)

Mason's wheelchair!!! Yeah, so excited!!!

We received the best surprise when we came home from the hospital. Mason's wheelchair was delivered. We love it!!!! It's a stoller wheelchair. The base is like a stroller and the seating is a wheelchair. It turns on a dime. We are so grateful for this amazing gift. He looks like a big boy when he rides in it. Thank you Lord for your overflowing blessings.

Thank you to all our hospital visitors!

Mason in music therapy with Grandma and Aunt LeLe

Aunt Nell flew down to see me!!!! We had so much fun!!

Ashley took me out for my bday for a girls day. So much fun , massages, pedicures shopping a girls perfect day!! Love you Ash

Mason and Baby Cole. The 1st of Many pics to come

Sean spent the summer w/ my parents and loved on Mason. He was so good to him and we miss you already Sean.

Happy Birthday to me! We had a fun day hanging in the hospital.

Sleep Study Details

Sleep study went well and showed us several things. First, he has central apnea. This means that his brain forgets to tell his body to breathe when he is in REM sleep. It also means that he has very shallow breathing. However, the majority of the time he does great. They are sending us home on an Apnea Monitor and possibly Oxygen. They will make the decision about O2 tomorrow. Tomorrow morning he will be going under anesthesia again to do an MRI on his brain and brain stem. They are looking for something in his brain stem that could be causing this. (It has a name I just can't remember what it is :) ) If he has this, it would cause these episodes to increase and will eventually need neurosurgery to take it out. Also this could explain the severe reflux etc. We will remain here until Tues and then hopefully go home. I will be in Orlando all week training and driving back and forth. I will update the blog as soon as I can. Thank you for your continued prayers and words of encouragement. Have a blessed week!



This looks like a comfortable way to sleep?????? What a trooper. :)

Eventful Night

Mason had a rough night last night. Around 10:00 his 02 levels began to drop. Every 30 to 45 min. we had an episode. He hit the lowest they've gone at 66. They're not supposed to drop below 93. We are discouraged. We were so hoping that all of this was a result of the pain med. but there is no way we can blame it on that now. Dr. Kriseman came in and is trying to get his sleep study moved to tonight. We are praying that can happen and we can get some answers.


On a positive note, Mason ate orally for the first time in 7 mth. He's struggling with the suck of a bottle but he got it down. He also ate some pears. He loved them!!! So cute to see him doing this. I needed a little pick me up and this was the perfect thing. Great job Mason, we're so proud of you!!!

Updates

Dr. Kriesman (pulmonologist) came by and has ordered a sleep study for Mason Friday night. This will tell us why his levels keep dropping. Looks like we'll be here a few extra days. From a surgery standpoint he's great and they have now handed us over to General pediatrics. Soooo we'll wait and see. Mason took a nap today for 2 1/2 hours and his numbers didn't drop once. Who knows???? We're thankful for every little victory. Thank you for praying.

Asking God for a Miracle

This is written with a huge sigh and slight discouragement. Yesterday, Mason had a great day. You'll see in the pics below he played a-l-l day!! To the extent that napping wasn't in his plan. All of this was fine and it was fun to see him so excited and happy about life. I've mentioned several times his oxygen levels. This has been an ongoing problem since we've been here. All the docs have been blaming it on the pain meds. He has officially been off them since Sunday. He had been off morphine but Sunday they removed his chest tube and gave him a little b/c the procedure would be painful. Yesterday, he received one small dose of Tylenol to help w/ his teething etc.. Last night his oxygen levels went down 10 times in 8 hours. (Not good) His levels should not go past 93 and he was in the low 70's and 80's. The worst part is he can't get himself to recover unless stimulated. Our GI doc is worried and we are waiting to hear from our pulmonologist. What this would mean is they would have to send him home on an apnea monitor w/ oxygen. We had one when we were sent home from the NICU. After two weeks of using it, we quit. It sounds like a fire alarm going off constantly. It malfunctions alot and can make life complicated. We're not sure if he has always done this and we didn't know or if this is a result of the surgeries. At this point, surgery shouldn't be an issue. We are asking God specifically to heal this area of his body. I'm sure you could understand that sleeping isn't an option when you think your child can't breathe. Kevin and I can handle it for a few nights but long term this could be a problem. We're also afraid of what effects this has had on Mason if it's been going on for a period of time. We will let you know as we receive answers. He looks great and you would never know he just had major surgery. We're praising God for a great recovery. Thank you for keeping him in your prayers. With Love, The Whitehouse Playing with his musical instrument! He loves this thing. The hilarious part is he'll hit himself in the head with it an then totally crack up!! Oh to be a kid. :)

I love Aunt LeLe!!