Friday, February 23, 2007

Braden and his friends

We just wanted to share some pictures of Braden's new friends. The first pic is of our Texas Childrens Hospital PICU Nurse, Kristy B. We stopped in to see her on our last trip to Houston. The next one is of all Braden's school mates on Valentine's Day, and the third is on Valentine's Day with the owner of the daycare, and one of Braden's special attendants - Latacia. The last picture is of Braden's new little friend Owen, he is two months old and the son of our friend Kim from Sunday School. Owen is also quite the "big baby", he is already just as long as Braden at 26 inches, and he weighs about 15 lbs, and can hold his head up really well - I just can't believe he is only 2 months - it's like holding a 5-month old baby!! Owen was quite fascinated to discover the "other baby" (Braden), and they are sure to be great buddies.

Braden is adjusting well to his oxygen regimen, and just now starting to adjust better to his feeding schedule. While we still have YET (at ten months) to have a full night's sleep without interruption, we are only getting up about twice, and about 15 - 20 minutes... let's hope this trend stays longer than the twice-a-night-up-for-at-least-an-hour trend... :-)

Have a great weekend everyone!

Tuesday, February 20, 2007

Happy Fat Tuesday

Although we spent this Mardi Gras parade season in the hospital, it ended happy, as we got to go home today. Braden got to watch this adorable little hospital parade that came through - some of the kids in other wards rode in little wagons and tossed out beads, cups, and stuffed animals. With his little hat, the nurses were calling him the Mardi Gras King.

We came home with some new "toys". Braden will now be on Oxygen when he sleeps, because his body has a tendency to relax too much, and his oxygen saturation will drop as he gets really relaxed. We were told that 98% of the kids who have oxygen at home, are put on it for sleeping purposes. So we will get set up at home and at the daycare too - so he will have O2 on-hand when he is napping, if his numbers make it necessary for him to have the extra help during the day.

We will also be adjusting his feeding schedule and amount... Braden is gaining weight appropriate for his age, however, his length growth has been pretty slow... so we have to find a middle ground, so as too much weight on a smaller frame doesn't make it that much harder for him to breathe. We hope to get him off of the night-time feeding machine, but we will have to see how his body tolerates the new schedule & caloric intake. He is getting close to the age where we need to decrease the calories some, and increase the water intake.

They believe he just had a respiratory virus that had to run its course, but may do a sleep study in the future to investigate more about his apnea episodes. So we will keep everyone posted about that. For now, we will keep praying for Braden to grow stronger, and that he will soon grow out of some of these issues as he grows older and stronger. He continues to make slow progress, but at least we are making progress!

Thanks for your continued prayers and support.

Kodi, Brad, & Braden

Sunday, February 18, 2007

Happy Mardi the ER

Saturday morning Braden experienced some respiratory distress due to some blocking of his air way because of some mucus. Kodi and I decided that we need to visit the ER. We arrived at the hospital at around 7:30am Saturday morning and by 2pm we were admitted into ICU, our normal hang out spot. The dr's said that this was precautionary and for 24 hrs, but we still remain in the ICU until the dr makes rounds. Not sure if we will be released to the floor or home. Braden is resting fine now and all the tests have come back negative so far, so that is good. We will post something once we know we are going home.


Tuesday, February 13, 2007

Juicy Update

Braden wishes all of you a Happy St. Valentine's Day, and sends many kisses your way! He really seems to be doing well at his new daycare, and they really have become like a second family. His caregivers all want to hold him, because he is so cuddly, and they call him "JUICY". The little ones are adorable & all say hello to him and interact with him. When I show up, they all run to the door to greet me with hugs - what a great way to end my day!!

Braden is now 20 lbs and 26 inches long... we were told that some of the medications he had to be on during his long hospital stay may slow his length growth for awhile, so maybe he will still be able to catch up:-) We told you that he has started rolling back to side and side to back, he is holding his head up for longer periods, he is starting to bear weight on his legs (which also, strangely, calms him down quickly), and is getting more social. If a new person enters the room & he hears their voice, he will look for that new voice. He is still playing around with figuring out how to use his voice without crying, and still trying to cut teeth, but none have come in yet.

Braden has been a good sleeper for a while now, but up until this past week, Brad and I were lucky to get three or four hours of sleep each night, given his machines would go off. Braden would be fast asleep, but in his relaxation, he would have a hard time keeping his airway open. For the past month or two (since Thanksgiving), his cough has really gotten stronger, and he is clearing stuff on his own. We thought he got a bug at Thanksgiving, but in retrospect, we think it was just then that he was learning to clear his own airway with a good cough! If we heard him cough at night, we would immediately rush to his bedside to suction him... but over the past few months, he is clearing it on his own - so we got maybe four or five hours of sleep apiece. Well, this week, Braden has slept through the night, THREE NIGHTS IN A ROW!! We still have to get up at 2 to add milk to his feeding machine, but until early this morning, he has been sleeping and clearing mucus all by himself!! So maybe some full nights of sleep are on the horizon - yeah!

Thanks for all your support, especially over the past few weeks as we make this transition with his caregiver. Once we submitted to God's will and just said, "Okay, show us the door you want us to go through, whatever that may mean", He has blessed us abundantly!! On our visit to Houston, the docs said that they have seen improvement in Braden, so we will remain hopeful that one day Braden will catch up to his peers in several areas, but continue to be thankful for the progress he makes, and thankful for every day we get to take care of this sweet little man in our life.

Happy Heart Day from our family to yours - The Wilson Family

Thursday, February 01, 2007

God is SO GOOD!!!

We have some great news to share with everyone. As I grow in my faith, I am still learning that I am worthy to ask God not only for the really big things, but the small things too. I have also learned that only He knows my innermost desires and can deliver the things in our life that we truly need.

Shortly after Christmas, a news story aired featuring a mom who has a special needs child, and would soon be opening a daycare that would accept children with special needs. You wouldn't think that in this day and age and political era, that childcare centers would be able to discriminate against the disabled - but it happens to us all the time - we just don't sue when we are denied access to services. This mom faced it so many times, she finally decided that without any government help or grants, Baton Rouge had a need for a facility that would openly accept children with disabilities. I only wrote down the name of the place and only jotted down an address, as I wasn't listening too closely, as we already had plans for Braden in the long-term.

I thought that I had thrown this paper away, since I wasn't really going to need it, but for once, my procrastination paid off. This past week I began to clean up the paper trails around my house and found that piece of paper again with a name and an address. So Braden and I packed up our things and just drove over. The owner's mom was there, and she took my information, and I made an appointment to come meet with the owner of the facility last Friday.

We started talking, and I learned that the owner (LaTacia) has a four-year-old special needs daughter too. I soon learned that her daughter also has epilepsy, a g-tube, developmental delays, an apnea monitor, has had a pulse-ox in the past, and also has a suction machine. We were there for about 15 minutes when LaTacia asked to hold Braden while I started to fill out some initial paperwork - and she went straight into "Mommy-Mode" and asked where the "on" button was on the suction machine was - I could not believe it!! We spent a few hours with her this past Tuesday in the center, and I got to meet and train Braden's other caregivers (four of them) - all of whom are related to LaTacia. They are very in-tune to Braden's needs, and have a very strong hold on their faith. They are AMAZING!!

Braden went to "Kidz Korner" for two full days this week (Wed & Thurs) and is doing great. After we came home Wednesday night, I literally began to cry for joy that God had answered our prayers, as I was reading Braden's daily progress report from the daycare. We could not have built a better care-giver for Braden if we had put in a special order with God himself. Tears of joy, thanking God for his everlasting love, and trusting that He will always have a better plan for us if we put our trust in Him.

We head to Houston to see the lead nuero on Monday, so we may have some nuero update next week. He is still having less than 10 seizures a day. Last week he had 8 bradychardia (slowed heart rate) episodes, and to our knowledge only has had 2 this week. We have some cool news to share... Braden is started to roll from his back to his side, and from his side to his tummy, until his arms get caught in the way:-) He is now doing this when he is not throwing a fit, so we think he is learning!! As you can see, Daddy is also teaching him how to use the phone and the bluetooth, so he may be calling you all soon!

Thanks to our ever-faithful prayer warriors, who continue to lift us up. Thanks to our bible study groups who continue to pray for us collectively, and to all those we don't know who have devoted time to add us in your prayers. We are so very thankful, and blessed by all of you.

Have a great weekend, we will be watching the SuperBowl from our hotel in Houston!!
Kodi, B&B