Leaving the hospital sometime soon...

Well, we have been moved to the floor, and that's always a sign that you are closer to going home, as you don't need as much constant attention. The downside is that you don't get any breaks, as a guardian must be with the child 24-7, so it wears on you just as much as being in the ICU. The ICU stress is more emotional, and the floor stress is more physical.

Braden has made a quick recovery considering he was on life-support nearly three days ago. He has amazed everyone here with his resiliance and fighting spirit. When the doctors and nurses tell you how worried about him they were his first day here - you know that your child was not in a good place, and God has blessed the hands of those who care for him to find solutions that Braden would respond to.

Here is a picture of him in his room on the floor, resting comforably with "Tiggie" at his side as always. You can't see his glow-worm, but she is in the bed with him too - he just loves how the face lights up and it sings to him - he seems fascinated every time.

Thanks for the prayers and support - we appreciate you taking the time to leave notes on the blog for us. It really does lift our spirits to know that so many people out there are pulling for Braden and for all of us.

Kodi, Brad, Braden

Mother's Day in the PICU

Well, it is my second mother's day to spend with my son in the hospital... I wonder if I need to put in a reservation now for next year:-) Braden gave mommy his FIRST TOOTH!!! one on the bottom finally broke through, and we are pretty excited about it. He is now off the temp blanket, off the catheter, and they are trying to wean him off the ventilator later today or tomorrow morning. It will be a great Mother's Day gift to be able to hold him again. The chest tube they will try to take out once he proves he can breathe on his own, and his lungs hold up on their own too. Dr. Thomas says those trouble spots we were worried about have cleared up on their own, and his lungs are looking pretty good overall too... we are still waiting to figure out what exactly the "bug" is that is growing in his cultures.

I wish all mom's out there a happy mother's day... and if you know anyone with a special needs child, I invite you to share the following by Erma Bombeck:

HOW GOD SELECTS THE MOTHER FOR THE LESS-THAN-PERFECT CHILD
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint Matthew."

"Forrest, Marjorie, daughter, Patron Saint Cecilia."

"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy."

"Exactly", smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she the patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in You."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect."

"She does not realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles. "A mirror will suffice."

Happy Mother's Day to all of you...
K, B, &B

Surgeries, Pnuemonia, and life in the PICU

Braden was not responding to our normal ways of calming him, so daddy took him to the pediatrician yesterday when he was not doing well. After a phone consult with the pulmonologist and Braden's lack of good response to oxygen, we got him directly admitted into the PICU, by-passing the ER. They had to work quickly on him, as his body started shutting down. After over 10 sticks and no luck getting an IV, they did bedside surgery to put in a central line. Braden had practically no blood pressure, and had to be put on a ventilator, as his body was too fatigued to work on it's own. He was practically blue head to toe by the time I joined them in the PICU, and there was no good news. He had no urinary kidney output, his potassium levels were off, and was not responding to initial doses of fluids.

Braden's blood counts were extremely escalated, his heart rate was really high, his temperature was remaining above 106, and he was not stable by any means. After a few hours of placement on a heating/cooling bed to control his temperature, he had come down to 102. All chest x-rays did not show anything amiss, until after the central line was put in near the right clavicle. Another x-ray showed the central line had flipped the wrong way, and so they took him into surgery to correct it. While there, they were unable to fix it, lost the line, and had to put in a second clavicle central line in the left side for IV access. They also gave him a femoral arterial line near the groin for a second point of IV access.

Another x-ray post-op showed his right lung was 30 percent collapsed due to problems with the central line. At this point it was about 6pm on Friday evening... but his oxygenation was coming under control, his kidneys began to function, and some progress had been made on his temp and heart rate. They did an EEG to ensure he was not in a state of continuous seizure activity, and that a lot of the time, he actually is having normal brain activity - which means his meds are probably working (praise God!!).

Once a second post-op x-ray was done, it showed that although Braden was maintaining proper oxygen levels, his lung had collapsed to 65 percent. The surgeon came bedside to do another surgical procedure to put in a chest tube. The chest tube pulls out the extra air outside the lung that was forcing it to collapse - correcting correct pressure in the lung. The lung has since re-inflated, but it has not been without some consequence. The pulmonary specialist believes there may be a few trouble spots due to the collapse, but we will keep monitoring it. (They have done at least 5 x-rays since we have been here) and continue to take films every 4 or 5 hours. The latest x-ray shows that he probably has a severe form of pnuemonia, but it takes time to show up on films, so we can't say for sure - but it is suspected.

We finally got his temp and heart rate stable around 11:30 last night, and had a pretty good night. They have started to give him some formula (small, small amounts) today, and we probably won't change much today to keep him stable. Tomorrow we may see how he will do off the heating/cooling blanket, and they may even consider taking him off the ventilator, but Braden is driving this train, and it's all up to him and his levels of progress.

We will try to post each day we are here - but no promises. I have attached a pic with arrows pointing to the various function of the tubes. Please keep our awesome little fighter in your prayers - he has really been through it in a rough way the past two days. Thanks for stopping by,
Kodi, Brad, Braden

Birthday Party

Gram, Papa, aunt Shala, cousin Paxton, and even cowgirl made it down from KS to celebrate an incredible first year with us. We had many things to celebrate... Braden's victory over still-birth, a near-death pnuemonia, and more... what a fighter he is, and we wanted to celebrate the amazing life of this little guy in a special way. We had a crawfish and shrimp boil (our first to host), and many friends came to join us for the day. Braden was having the day his way, and was struggling with his temp and heart rate - but many got to see first-hand what every day is like for us, and I think that was a good thing:-)

Paxton is just in-love with her little cousin, and is such the protector of him. She even feeds her baby the way Braden gets fed in his tummy tube, and gives the baby "breathing treatments" too... so fun to have them with us down here in the south!

Thanks to all those who have sent cards, notes, gifts, and especially to those who joined us for the festivities - our first birthday memories will be so special.

K,B,B

What is a cupcake, mom?

Although Braden does not eat anything by mouth yet, I though it might be fun for him to feel the texture of the cupcake, and maybe taste a little frosting. We do a lot of hand-over-hand work to teach him he can do things himself. So mommy tried to show him how to put stuff to his mouth. Not sure if he liked it, in fact I think he was just done with the whole picture thing. He slept through the night after we took these pics - he was a tired boy!

We are anxious for our house-guests to come this week, and spent the weekend making room. We are so excited to celebrate all the struggles our little man has overcome this year - and to celebrate the life of this little fighter.

Hope you enjoy the pics...
K, B&B

First Birthday Fun

We spent some time taking pictures, and mostly making handprints and footprints for my scrapbook. mommy found the cute little duckies that reminded me of the duckies at the fundraiser, so she put my thumbprint on them for some family members as a keepsake. I sure gave mommy & daddy a hard time, because you know I like to keep my hand in a fist, especially when I am mad, so the painting got a little crazy - I even got some on my nose! But eventually I settled down and figured out it wasn't so bad, and I let them help me paint. I was sure tuckered out by the end of the night. All the painting and washing and then the final bathing really made me tired, but I am sure mom & dad will have some happy memories to look back on. This weekend mommy plans to post more pictures from my "photo shoot" - feel free to come see us again soon! Thanks for stopping by:-)

Braden Mark Wilson
and mommy Kodi and daddy Brad

Slide Shows to Share

My friend Niki Arena created these slide shows for us (she is AMAZING!!) back in December, and as Braden turns ONE YEAR OLD tomorrow, I wanted to share them with all of you. You may have to install a new program, but the site provides the software to view the albums, and doesn't take to long to load. There are 5 slide shows, that feature Braden up to 8 months old.

Here is the link to view the shows:
http://www.photodex.com/sharing/viewalbum.html?alb=0&bm=50926

Click on Braden Mark Wilson to view the shows.

Enjoy... tomorrow I will be posting Braden's FIRST YEAR photos!

Kodi, B&B

Spring is here

Pic of baby snuggling with mommy...

And so begins the bouncing around of the weather - jackets and heaters in the morning, and by lunchtime it's windows down and cool air blowing. Braden's respiratory health seems to bounce around along with the weather. We have been lucky enough to experience getting up just once a night, twice this past week... stark contrast to the nights I was up for two hours at a time, and we both were up at least 5 times each if not more. This little guy sure knows how to keep us on our toes.

Daddy is headed for his first trip away from us this week, and mommy is both anxious/nervous to be a single mom... I am excited to get so much QT with my little man too. Pray that I get sleep and keep my sanity as I try to juggle it all by myself. I am already so blessed to have a husband that splits all baby duties with me 50/50.

We are already preparing for little man's birthday party in a few weeks - it's hard to believe our "little" ham will almost be ONE!!

Kodi, B&B

Happy Easter

The Easter bunny brought us an early present - a precious boy in our Easter Basket. God's blessings to your families on the most awesome weekend!!

He's Bubba-Licious!!

Happy Holy Week. Thought we would drop a quick update. Braden is only getting up about 3 or less times a night, and mommy and daddy are still trying to adjust to the extra allotment of sleep... we hope to be able to fully enjoy it soon without the extra wakings without Braden:-)

Thought I would share some of the things about Braden that puts a smile on my face. When Braden is trying to fall asleep, sometimes he will kick in his legs in a bicycle fashion. When he is awakened and still wants to be sleeping, he will arch his back and stretch and kind of grunt. When he is waking up from a good nap, he will scrunch up his face and stretch his arms straight out. He is also getting more active about "singing" or "talking back" to you... even his therapist this past week was enjoying the back and forth exchange of cooing with him. Braden is getting re-evaluated next week, to see if he will be able to handle semi-solid foods (or at least try) with rice cereal or yogurt or pudding - so we will keep you posted with that exciting news. It will probably be more of an exercise to teach him how to eat, than to get him nutrition, at least until he gets the hang of it.

Here are some pics we took this week to celebrate the Easter Holiday - we will post more next weekend too!

We could use some extra prayers for mom & dad this month, some unexpected expenses have come up, and we know that God will provide a plan, but it's still very stressful on them. At least Braden is getting stronger, having fewer oxygen drop alarms, which is some hopeful future peace of mind.


Love to all - Kodi, Brad, and "Bubba-Licious" Braden

Nice weekend in the pollen & the oaks

Mommy & Daddy struggled through being sick Friday & Saturday, and about noon Sunday finally felt good enough to venture outside, and yes, into the pollen. We made our way to Oak Alley Plantation for a partly-sunny day at the arts and crafts fair, and just enjoyed the spring beauty. For those who don't live here, the spring brings a ridiculous amount of yellow pollen that coats everything... reminds me a lot of the dust storms we suffered in KS in the late 80's. After walking the grounds at the plantation for only a few hours - our ankles and shoes were absolutely covered, along with everything else. We could tell we had enjoyed the outdoors long enough once our faces started to itch, and the sneezing ensued. Although we battled sickness on the homefront, the weekend ended well.

We got results back from Braden's last heart monitor, and it showed that he is having no arrythmia - which is a blessing! Braden seems to be taking to his new routine well, as he is sleeping more throughout the night (finally), and we hope soon he and HIS MACHINES will sleep for a six hour stretch! :-)

Braden's medical prescription needs continue to escalate, but he seems to be responding well to the new medical protocol. When Braden is continuing to grow strong, we know the sacrifices we make now, will be worth it in the long run.

Thanks for your continued prayers. Mommy learned today that God even answers small prayers... and He is SO GOOD!! Thanks for keeping us lifted up in His love and grace.

Kodi, B&B

Happy St. Patty's!

Sorry the post is late... we have been battling to keep Braden out of the hospital. While on the phone, our nurse wanted to take him in, we refused, knowing the circus that ensues once we are there... they freak out because he breathes so heavy and "in distress", that we get stuck in the ER for five hours, and then they admit him & keep him for at least four days. Now that we have oxygen at home - there is not a whole lot more they can do for him at the hospital, that we can't do at home, so we are trying to keep him out of that environment and possibly picking up second-hand illnesses/viruses, as has happened in the past. Luckily, our specialist Dr. Thomas agreed, and we just started an aggressive 7-times a day nebulizer treatments of saline, pulmicort, and steroids, plus adding antibiotics to his formula, and using the inhaler as needed... this will continue for 28 days... then we step it down a little bit, as we lose 3 nebulized treatments a day of the steroid, but will maintain a more intense nebulizing schedule to keep things loose so he can cough it out. Braden is really doing a great job of that!!

After we got his new routine established, we took a break as a family on Sunday to take a walk on the levee... mommy & daddy got to enjoy some down time in the cool breeze (a rarity for these parts), and Braden took a nice nap. Usually he like to look around a lot during a walk, but the new schedule and fighting off sickness/allergies/etc. had him a little worn out! We have had some rough nights with little sleep lately, as we try to get him healthy again, but slowly we make progress.

Will post again soon - we are planning another family outing this Sunday too. We will try to take some pics to post for everyone. Thanks for checking in on us...
Kodi, B&B

March Madness

Braden and his frogs, as we gear up for St. Patty's.

Well, our little man has a case of the GREEN... but not in a good way:-( His poor little sinuses are so packed, they are overflowing out of his eyes, so they are oozing green stuff. We started a regimen of antibiotics and hope that kicks it - if not we may be looking into treating potential allergies he may have inherited. The winter was pretty mild, so the allergy season here is truly in full force, and affecting the masses.

To update you on Braden's progress:

Braden can hold his head up for longer periods, and there really isn’t much “bobbing” anymore. The other night he held it up almost constantly for about half an hour with a few short breaks before getting tired… so we are seeing progress. He is cooing a lot more… mostly just like humming an “aahhh” or an “ooohhh” – which we know are his happy and content sounds. Sometimes he will ‘sing’ to us all the way home from daycare! (He LOVES car rides and stroller walks, and being held – those are times he is cooing most). Still not a lot of variety in his sound making, except those little jibbers we get when he is dreaming (adorable & hilarious at the same time). It sounds like shaking off a chill or something… hard to explain, easier to imitate.

He is finding that he can move his arms with purpose, and not just when he is mad. He is back to hanging them out to the side, or up in the air, or ‘flex’… some of which we haven’t seen since we were hospitalized at TCH at five months. So we are hoping to now move forward from here, now that we seem to have caught up to our "pre-TX" status.

I can't believe he is already 10 months old, time has really flown this year. Al new parents are told this - but you don't really expect it to go by as quickly as it does. Thanks for your continued prayers and support - our lives would be SO MUCH DIFFERENT if it weren't for the wonderful people in our lives, like YOU!

Kodi, B&B

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!
K,B&B

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

Happy Mardi Gras.....in 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.

BRAD

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

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

Even MORE Limbo - Our faith is being tested

Well, we received the news this weekend that Braden will not be going to Susie's after all. We eagerly wait to see what the Lord has planned for us next.

Our friend Stacie has been an amazing caregiver to Braden in the few weeks she has been watching him, and we are so blessed she was able to help us for a few short weeks.

As of today, we have no temporary or permanent solutions, and so begins another round of trying to figure out who can provide good care for our son. The women of my bible study have been TRULY AMAZING and supportive, and they are all trying to help me find viable solutions.

Please pray for us, as this has been very emotionally distressing on Mommy... we know that God will show us His true plan for us, but until we find the solution, it is truly agonizing every day we don't find an answer. We hope to find a stay-at-home wife or mom who may be interested in taking Braden, or a college student with the availability and willingness to learn about how to care for our little man. He is actually pretty easy, the hardest part is finding a comfort zone when his machines tell you something is going on. We really loved his last nanny, Ms. Caralyn who has moved to TX to take care of another families' children as a live-in Nanny, as her schooling plans didn't quite pan out for her in Arkansas.

We are open to any and all suggestions you all may have for us, as we are running out of options. We are faithful that God will send us an answer, and that Jesus is with us in our fiery trial of life - we are not alone. (Isaiah 43:1-2)

Thanks for your continued prayers and support!
Kodi, B&B

In Limbo

First let me share that God continues to bless us amidst a multitude of queries and uncertainties. We hired a nanny before we left for the christmas holiday break, and when we came back, we learned that she was not going to be able to take Braden. So we interviewed again, and found a great potential candidate, that decided before our last day of training, that it might be too much for her. So we were two days into what was supposed to be my "back to work" schedule, wondering what on earth we were going to do for 6 - 8 weeks until Braden will be going back to Susanna and her new baby Kailey full time.

In the fall, I joined a bible study group that is specifically for moms/grandmoms of special needs children. Immediately I felt a cameraderie with these women, and felt like I had found a place that would provide me with the "support" that I was needing, both emotionally and spiritually. After sharing with a few women in my study, that TWO nannies had essentially backed out on us, I made a few phone calls to a few women in my group. One of my friends in the group, Hillary, offered to take Braden back in December when we had to go searching again after Caralyn moved. The unfortunate thing, is that she lives 40 min. away, and the commute from her house to Baton Rouge in morning traffic is an additional hour & a half. Yikes. So we were hoping to find someone who could take him temporarily to fill the gap, who might not create a daily four-plus hours commute:-)

God answered our prayers through a friend from study, Stacie Coles. Stacie has her own special needs child, Brian - who is 21 and suffers from an unnamed bone and muscular disorder. Stacie works out of her home while Brian is away at school, and did not have any work set up for January... so she GRACIOUSLY accepted our request to watch Braden for a few weeks. Stacie has been an amazing friend already, and now she gets to love on Braden 3 days a week with her Boston Terrier, Lucy. Braden is doing really well at Stacie's. I can't even begin to describe the emotions I feel when Stacie agreed to take him. This is such a huge burden lifted from our shoulders - emotionally, spiritually, financially... and we will always be grateful to the Coles family for helping us in our time of need. I have attached a few pictures of Braden with his new sitter(s):-)

I am also attaching a link to see our PICTURES FROM CHRISTMAS on snapfish:
http://www1.snapfish.com/share/p=235171169087655910/l=239882987/g=24589807/otsc=SYE/otsi=SALB
Thanks for continuing to keep us all in your prayers - they are helping!! Braden is still having the occasional "BLUE episodes", so we hope to get the heart monitor soon to get through the 30-day recording period so we can HOPEFULLY find some answers and solutions for this problem. Thanks for checking in with us, we will post another update next week!

Kodi, B&B

Back from Break with a bang

Our Christmas holiday was such a wonderful time with our families, it was hard to come back to daily life here. Braden traveled just fine on the trip home, but he seems a little more settled now that we are getting back into routine with him.

Some neat news about Braden, is that the poor little guy is pretty fussy these days - he is trying to get some teeth! Since he is not a baby that picks things up and puts them in his mouth, we are having to hold his teething toys for him, so he can chomp down on things, but he seems to enjoy the cool ones from the fridge, and likes this one we got that vibrates when you chomp down on it. I was super-excited to see that Braden is figuring out cause-and-effect with this toy!
We think he has been fighting a virus on top of it, as towards the end of our trip, he was spiking a fever above the 102 mark. So on our return, we have been treated with injectable antibiotics, and he seems to be responding very well. We are also learning that when Braden is feeling pretty good, he will only have one or two seizures a day - praise God!! PROGRESS!!


We visited the pulmonologist who has reccommended we put Braden on another few machines, and I will share more about them once they get here. One is a "cough-assist" to help Braden clear things that my be a little deeper in the throat. The other is a 30-day heart monitor. Braden started having a new kind of seizure in the past few months, that makes his heart rate really drop low, but once the seizure is over, he recovers. What the doctor wants to know... is if it is a heart arrythmia that is causing a seizure, or a nuerological issue that is causing autonomic seizures that result in the drop in heart rate. So this should determine the cause... please pray that Braden's heart will be just fine, and these issues are nuerologically related.

We had some excitement last night, as I went to bible study and Brad had a ball game, our friend Stephanie agreed to watch Braden. She is a quite capable and knowleadgeable baby sitter, but nothing could have prepared her for the night she was about to have... She called me to tell me that Braden's O2 saturation (sats) kept dropping, so I walked her through suctioning him good. She called back about 15 min later, saying his sats were staying in the 40s and 50s, and suctioning was not helping. I was a little panicked, thinking maybe some phlem got lodged in his throat, blocking the airway, so I had her pound him on the back and keep trying to suction. Nothing was working.

I hopped in the car and was racing home - thank goodness my bible study group started praying for me as soon as I left, because knowing all the traffic laws I broke trying to get there as fast as I could - I could feel that God was protecting me. I called 911 to have them get Braden oxygen, and as soon as I got there, I flew the door open, I think I pulled one of the fire department guys out of the way like supermom, and gave him good suction, made sure his airway was open, and re-checked his foot attachment, and suddenly I noticed that his lead had come loose from his foot. As soon as I repositioned it, Braden's numbers showed us that he was just fine, and there was no need for panic. But over the phone trying to figure out what was going on, all I could think about was Braden not getting enough O2. All is fine - he was probably fine the whole time. The sitter (Stephanie) said she never saw him get blue around the mouth or face, and he wasn't acting any different, so she just wasn't sure what to do. Now we have a great story to tell about how while I was crying and driving like a maniac, the only thing that was wrong was the silly lead had come off his foot partially. We will see if Stephanie ever agrees to watch Braden again, I was sure that they were going to have to give HER oxygen amidst the madness. :-) She did great, and did everything exactly right... I am glad she was there taking care of him - as there was nothing else anyone could have done different. It was my fault for not explaining the lead could come loose! Well, it will make for a great story at social gatherings. The joys of parenthood can overwhelm me at times:-)

I have attached some pics of the little guy at christmas, and to share with you how LONG and curly his hair is getting. The pics are post-bath where it really curls up - he has some crazy hair to deal with... I thought I had bed-head in the mornings, but he takes the cake!

Thanks for all the christmas cards, the wonderful gifts, and the love you continue to send our way and lift us up in your prayers. We are ever-so grateful as we begin our 2007 journey. Love to all!

Kodi, B&B