Merry Christmas 2009!

What a busy, but wonderful year our family has had! We are so blessed this holiday season and grateful beyond words to a loving God, who has sustained us and supported us throughout!
Merry Christmas to all our friends and family!
Our sweet Chrissy is about to celebrate her NINTH birthday this coming Saturday! WOW! Has it already been nine years since we adopted this sweet little angel?! What a joy she has been to our family! For a little baby who was only supposed to live weeks or "at most" a year, she sure has proved the medical profession wrong on many accounts!!
She wasn't supposed to see or hear, be able to eat, be able to sit up, be able to talk, be able to move or know who or where she was and the list goes on and on......
BOY CAN SHE DO MANY OF THOSE THINGS!! Sure, some of those activites have to be adapted to her level, but she CAN do them!! And so much more!
- She sits with the help of a back brace, and her wheelchair, and other adaptive devices
- She sees with the help of glasses and vision teachers who are helpful and supportive
- She hears like a CHAMP! And she doesn't need any help with this one - this kid can hear a pin drop in the next room! Her favorite sound is the sound of velcro being pulled apart - just cracks her up every time! Oh, and the sound of a sneeze also sends her into gales of laughter!!
- She "talks" by cooing, laughing, hollering her pleasure and her displeasure (LOL), and making all kinds of adorable sounds! We were afraid we would lose that sweet voice when she was trached in March, but she has already learned to "talk" around her trach and to use her passey valve to talk up a storm!
- She attends school and is in 3rd grade. Her teacher loves her and is much loved by Chrissy! She especially loves any activities that involve music!! She gets lots of one on one attention as she is currently homebound for school to keep all those winter germs away from her!
- She loves to play with her toys that have been adapted with switches to make it easier for her to activate them. Dolls are her current favorite, as with any little girl! She also loves anything princess or Disney!! How she smiles and laughs when we dress her up or give her her princess mirror to play with...
- Chrissy is tube fed, but she enjoys her meals just like the rest of us. How do we know this? Because she smacks her lips in pleasure while being fed and sighs her contentment! There are many ways she communicates with us! She also likes the occasional lollipop or sweet treat that we can give her now that she is off the Ketogenic Diet!
- Chrissy knows her name and knows all those in her family and her nurses. She lights up like a Christmas tree every time you say her name. She LOVES attention!! LOL She has a certain look and reaction for every one she knows and it is obvious that she loves her family as much as we love her!

I read a story today on AOL about a little boy in Colorado who just turned one year old. It was one of those "miracle" stories. It was a wonderful story, but it sure saddened me to read some of the comments made by people at the end of it. Comments about how he should be dead and how he is nothing but a vegetable and a drain on society, etc etc
Why are people so heartless and cold, not to mention ignorant? People should reserve comments on things they obviously know nothing about!!!
Chrissy's life is meaningful to all those around her! She has touched so many people in her life by her sweet spirit and her joyful nature. She is sooooooooo intelligent in so many ways - and she doesn't need a brain to be that way! She only needs the spirit her Heavenly Father gave her, and a little help from those who love her to live a very full life and be a happy child! She has been everywhere with her family from Disney World, to Alaska, to California and even to Hawaii!! And she has enjoyed every minute of it - her smiles attest to that fact! She is a complete little person and deserves to live her life just like the rest of us "normal" people. What is normal anyway??
Personally, I think she is above the classification of "normal" - she is EXTRAORDINARY!!! What an inspiration she is!! I am so proud to be her mommy!!
HAPPY BIRTHDAY SWEET ANGEL!!! WE LOVE YOU SO MUCH!!!

ACTIVATION DAY!

Yesterday was the big day! Emily's cochlear implant surgery was on August 31st. Yesterday, the 28th of September, it was activated for the first time! It was just set on the lowest setting and will be adjusted in volume today and then again tomorrow. But her reaction was good even to the first and lowest setting! If I can figure out how to do it, I am going to upload a video of her activation. It is about 10 minutes long, but worth the look!

Good News for Emily!

We heard from the coordinator of the Cochlear Implant team today (on a Sunday at that!) and it looks like we have finally jumped through all the hoops and crossed our "t's" and dotted our "I's"!! Emily will tentatively be scheduled for her cochlear implant the first week of August (or sooner if an opening comes up on the surgery schedule)! We are so excited for her!!! YEAH!!

A Busy Summer!

We just returned from our trip to Florida. The kids and adults had a great time!! We spent three days at Royal Pacific Hotel and went to Universal Studios and Islands of Adventure and then headed over to Disney, where we spent seven days at Port Orleans Riverside and did all the Disney Parks! Chrissy did very well in spite of the heat and enjoyed all her favorite rides. Emily LOVED meeting the princesses, especially Cinderella. Stephen rode Expedition Everest (his first BIG coaster) and Splash Mountain (water ride with a big drop at the end) each for the first time and really enjoyed himself. And of course, Katie and her friend Nicky (who went with us) spent all their evenings at the pool and hot tub boy-watching! It was a nice and relaxing time for all.
Now we are back at home and gearing up for Andrew and Dana's visit from Alaska, starting on July 4th. We are having a 1st anniversary family dinner for them on July 10th at Clementine's in Houston and will have about 30 people there, including Andrew's birth family from Arizona (who we are really excited to meet) and Dana's dad and Grandmother from Tennessee. It should be a fun evening. Andrew and Dana will be visiting us until July 13th, when they will fly on to Orlando for their belated honeymoon and will be visiting Disney themselves for a week!
Then at the end of July Katie and mom will be flying to Las Vegas for a few days of one on one mother and daughter time! We will be staying at the Luxor and plan to see the Criss Angel BELIEVE show at the Luxor and also the Lion King Show at Mandalay Bay. Mom is hoping for some "down" time just relaxing by the pool for a couple of days, but knowing Miss Katie we will be out window shopping in the heat!!
I am almost looking forwad to school starting in August so things around here will slow down a little!!

Happy Easter friends and family! God has blessed us greatly this year and I want to take this opportunity to thank Him for his goodness and for the sacrifice of His Son, Jesus Christ.

Our family is looking forward to our move in two weeks and to our upcoming family vacation.
Where, you ask?

Back to Disney World, of course! We are planning a trip as soon as school gets out, just in time to celebrate Stephen's 7th birthday! He is beyond excited to be getting a trip to Disney for his birthday - he can't wait to ride the new Toy Story Mania attraction.

It should be a fun trip and since we haven't gone anywhere as a family since Dec 07, we feel it is a much needed time to relax and spend some time together. Where better than the Happiest Place on Earth?!

April 2009 - Settling down

Things are relatively back to normal in our home - well, as normal as it gets around here!
Chrissy is adjusting well to her trach. She had her cuffed trach changed out last week by her ENT for a cuffless one. Main difference it it allows more air up and around the trach. It took my smart girl about 10 minutes to figure out that meant she could push air past the trach and make noises! So that is just what she has been doing ever since! I am so happy to hear her little coos and aahs again. We had asked for a passey muier valve for her trach so she could use her voice, but it is just like Chrissy to figure out how to do it on her own! What a woman she is!
Stephen lost his last front tooth on April Fool's Day and he is now our toothless wonder. He looks very cute with that gap!
Our best news is that we have found a new house to lease with the option to purchase! It is in Riata Ranch, which means Katie doesn't have to change schools when we move! That is a very good thing or we would have a rebellion on our hands! She is tired of changing schools!
We were fortunate enough to find a one story so the kids in wheelchairs can navigate the whole house! It is also a gated community, which is great for keeping the little ones safe when they are playing outside!
Now if Kevin can just find a new job all will be right with the Mason world!! Keep us in prayers!

HOME!!

Hi Everybody! We are home!! We were supposed to be released Monday, then got bumped to Tuesday because the pulmo dr wanted to see if Chrissy could do C-Pap on the vent at night instead of regular vent settings. She failed that test miserably, and had apnea so much the first two hours, they gave up and put her back on the vent! She is doing great during the day though on just a trach coller part of the day and HME part of the day . We didn't get home until late yesterday and spent the evening getting her settled and the vent set up at home and all that. Today we spent the day moving her room and getting supplies put away and organized. Her bed was in the master bedroom with me, but now we have night nurses and since it would be kind of weird to have a nurse in our bedroom (LOL) we moved Chrissy to her own "room" (it is actually our study/dining room but now it is hers).
Chrissy is doing so good with her trach and we are really happy with the results. She breathes great now! She and I thank you all so much for all the prayers and well wishes!!

The saga continues

Hi again everyone. Well, we are still at the hospital. Chrissy is doing okay. She is being weaned off the vent and they are very slowly doing that. Don't ask me why it has to be such a long, drawn out process, but that's the way they do things here! She has been on straight trach collar trials (just using trach collar with warm humidified air on a blowby) today. First they let her go one hour on it, then back on the vent, then two hours off, and back on the vent, then three hours off. She is back on the vent for tonight and tomorrow will go longer off the vent. One thing they are concerned about is her central apnea while she is sleeping, so tomorrow night she will have a sleep study done - half the night on the vent and half the night on c-pap through the vent. If she tolerates the c-pap only and doesn't have a lot of episodes of central apnea, she will go home with a portable vent that uses c-pap (sorry, dont know the technical term) through it. If she has a lot of apnea episodes even with the c-pap, then she will go home on the vent at night, but off the vent during the day. Hope all that makes sense!!
She is adjusting well to her trach. We are only having to suction her three or four times a day, which they tell me is a good thing! At night we maybe have to suction once. The respiratory therapist says that the vent keeps them pretty clear of secretions, and we may see a slight increase in secretions and suctioning when she is off the vent.
We had trach care and trach change class today and I was able to change her trach for the first time. Kind of scary, but pretty easy to do. Her dad was here and had to change the trach too, so she got two back to back changes. Dad was more nervous than me and was slower too! LOL
The plan at this point is for Chrissy to go home on Monday, so we have a few days yet to get through. Two weeks in the hospital is a looooooonnnng time!
Emily has her sedated ABR (hearing) test in the morning. Her dad is bringing her up to the hospital in the morning for that.
Our dear friend (and Chrissy's nurse) Peggy is helping out with getting Stephen and my neice Marissa on the school bus in the morning. I am so thankful we have her to help us out! And did I mention how grateful I am she is Chrissy's nurse!! We are so fortunate to have her as a friend and as a nurse!
Thanks for all the prayers everyone!

Sunday Evening Update

We have moved from PICU to a regular room! Chrissy has had a good day. She is off all sedation and has been awake and alert all day. She has even shared some smiles with me today! She is being weaned off the vent and hopefully by tomorrow she will be completely on room air.
She started her chest PT today with the Vest and seems to enjoy it. She smiled and fell asleep during the treatment. She is only needing minimal suctioning and has a strong cough, which is a good thing with a trach!
They have started trach training with me and I have already learned to bag her and to suction her. Tomorrow the "trach team" comes to discuss her case and all the supplies we will be needing.
So things are still looking good for Chrissy and I am happy tonight!
Stephen is feeling much better now that he is almost done with his Zithromax. Hopefully he won't relapse with the strep again! He is excited to return to school tomorrow.
Emily's eyes are looking much better now that she is a week out from her eye surgery. Most of the redness is gone and the swelling as well. She is supposed to wear an eye patch two hours a day, alternating eyes each day. But do you think it is easy to keep an eye patch on a three year old?? NOT!! Not sure how that is going to go!
Goodnight everyone!!

Things are looking up

Well, Chrissy had a rough day yesterday. Last night she got a mucous plug and I had a whole room full of nurses and residents in here trying to clear her airway. Not a pretty sight and scared the heck out of me! She is okay though. Her fever has spiked a couple more times, but comes right down with tylenol. All the tests have come back negative, but she is on antibiotics anyway.
They have discontinued her phentenol and she is just getting versed as needed now. So she is awake quite a lot more and is learning to manage her secretions. Her Robinul was stopped after the mucous plug incident yesterday as they FINALLY agreed with me that it was making her secretions too thick!!
Today has been better. She is too funny though about her saliva. I guess she has forgotten how to manage all that spit, so she is "chewing" like she has food in her mouth and then she will just spit it all out every few minutes! She is soaking her bibs, but hey, it's better than a mucous plug!!
Tomorrow is the big day. She gets her sutures out and a new trach put in, and comes off the vent. If she does well, we get to move to a regular room in PCU. Then the trach team comes and we start learning how to take care of the princess with a trach!! After seeing what a mucous plug can do, I am a little nervous, I must admit. But it will be okay - this too shall pass...
Stephen went to the doctor yesterday and he has strep again. Little man is on Zithromax. He is already perking up today.
Again, thanks for any and all prayers you can shoot our way!! We appreciate them so much!

Good News, Bad News

Today was a very busy day for us. Kevin stayed with Chrissy while I took Emily for her genetics appointment (part of her eval for the cochlear implant). Afterwards, the Cochlear Implant Counselor met with Kevin and I to teach us about Cochlear Implants and all that they entail! Boy, is it ever complicated! Just the counseling took four hours! But the good news is that we are almost done jumping through all their hoops and all the testing is just about complete. They have accepted Emily onto the candidate list and hopefully she will be getting her Cochlear Implant by early summer! I am so excited for her as she wants to hear and talk so badly! She uses what little hearing she has to the fullest extent and her teachers are amazed that she talks as well as she does with so little hearing to work with.
Now for the bad news.....Chrissy is not doing so well this evening. She has spiked a fever (104.9) and her heart rate is staying way up. She has been started on an antibiotic and had her trach suctioned and ties changed tonight as well. She is pretty uncomfortable tonight and alternates between little seizures and chills. Please keep her in prayers! We were hoping to move out of PICU tomorrow, but don't think that is gonna happen now! I think we will be here a couple more days yet. She is a trooper though and is hanging in there.
Meanwhile, Stephen is not feeling well either. Not sure if he is relapsing on his flu and strep, or what is going on. I am worried about him. He just doesn't seem "right" to me. His dad is taking him to the doctor tomorrow. When it rains, it pours......
Take care everyone. More tomorrow. It is 2:30 am here at the hospital and I am going to try and get a little sleep!

Update on Christina

Hey everyone. Chrissy had her surgery Tuesday morning. She had a tracheotomy. She is sedated and doing okay. The procedure itself only took about an hour. Protocol at Texas Children's is for her to be sedated and kept quiet for up to five days. She is on a vent during this time to help regulate her breathing.
She slept most of last night and today. She has been awake more this evening. She is not sure what is happening I think. She is afraid to swallow, so her secretions in her mouth tend to build up and instead of swallowing them, she spits them out! I guess its back to bibs for a while!
She is calm and not upset though. I think she is going to adjust just fine. Her breathing is a LOT better already.
I stayed yesterday and last night with her and this morning. Kevin came around noon and is staying with her tonight. I plan to be back at the hospital in the morning around 5 am, before the ENT surgeon comes in at 6 am! Why do the docs have to come so dang early in the morning!?
Well, that's all for tonight. I will update again tomorrow.