A growing boy....

At 18 months, Braden weighed in at 24 lbs and 28 1/2 inches tall. At 19 months, he is now 24 lbs 6 oz and 30 inches tall!! The doc measured him at a mere 29 1/8", but he was not relaxed like he was when mommy & daddy decided to measure him the other day. His therapists kept commenting they thought he was getting bigger, and we agreed, so we decided to measure ourselves, and imagine our surprise when a month later he had grown so much!!

People often comment on what a "big baby" he is... but if he developed like other children he would be moving about and you could see how short he is in stature compared to his peers... he is not even on the curve for children his age. However, for his weight he is just below the 50% mark.

We still don't have results to share from his MRI yet, but hope to next week. Please pray for our doctors to revisit all his medications with the new information so hopefully we can still postpone the keto diet and try some new meds.

We didn't take too many Thanksgiving pics - too busy frying 3 turkeys and enjoying time with friends... so I am sharing pictures from earlier this month when Jackson's mommy & grandma went with Braden and I to "Mistletoe Market". Again Jackson just loves playing with Braden's hair, and his grandma got such a kick out of how much joy Jackson expressed through his laughter and squeals of delight as he played with Braden.

We will post some photos from Braden's christmas session next week, so stay tuned!!
The Wilson's

MRI This morning

We have been trying since JUNE to schedule Braden an MRI. Sounds simple, right? If you have read any of this blog before, you know just how far from the truth SIMPLE can be:-)

What is complex about Braden's case... is three main things. 1. The neuro wanted a special kind of MRI done (spectrometry?) done... it's like a more in-depth look at damaged areas, I think. 2. Due to Braden's respiratory condition, the hospital (and only place in town who does this special kind of MRI) did not want to do an MRI on Braden unless he was on a ventilator. 3. Sedation was not an issue because of his floppy airway concerns. SSSSSOOOOOOOOOOO... we finally got the neuro on our side about NOT wanting to put Braden under anesthesia, as he has a very difficult time coming off anesthesia, and an even more difficult time coming off a ventilator, and we felt it wasn't a pressing enough of an issue or necessary in order to validate going through all of that and the risks associated with those procedures. So we FINALLY got the hospital to agree to do it without sedation and without anesthesia, and if it didn't work, then we would just try to do it at another time when he was already under those conditions of a vent for surgery, etc.

They needed to do a 2-part MRI... a non-contrast and a contrast MRI. The first they do without anything... the second they add a contrast dye to the blood stream to the brain to get a clearer picture. Braden slept soundly through the first two parts of the MRI, and did just fantastic - NO SEDATION, NO ANESTHESIA... so it was worth the struggle and the fight against the "doctor's/MRI team" judgement to have it done the "mommy and daddy" way. He did just fantastic, and they did not need to do the 'spectrometry' part of the MRI. We are so proud of him, and knew that he could prove the MRI team wrong about his ability to be still and quiet without sedation or being put under. Of course his nurses were doting all over him:-)

We started doing our VEST therapy a few weeks ago, and I have included pictures. It looks a lot like a water safety lifevest, it inflates with air, and then pumps air into the vest and it is like us patting him all over to break secretions in the lower lungs up to work them up into the upper airway for coughing out or suctioning. Our little daycare friend Jazmyn calls her VEST machine her "washing machine", because she says it shakes her up like sitting on the washing machine:-) Mommy catches people a little off guard, when she says "I have to go shake Braden" (meaning hook him up to his machine that more or less shakes him):-) Braden, funny as he can be - usually sleeps through both treatments!! We think this machine will continue to help Braden grow stronger, by helping us avoid additional pneumonias he may be susceptible to. As you can see, he gets his breathing treatments at the same time, it helps break stuff up in the lungs even more so, for better pulminary health!

I have also attached a picture of Braden's picture up on the wall at Sears... he is up there with some professional models!! :-) We had his Christmas pictures taken and will share next week.

Thanks for checking in on us - check back soon for Thanksgiving photos and his christmas photo session at Sears! Love to all,
The Wilsons

LSU Parade

We went to the LSU homecoming parade this past weekend. As you can see, Braden has some learning to do about Louisiana parades and how to get more beads thrown his way, but maybe he has to stay awake next time... that might help a little.
Isn't he JUST ADORABLE sleeping on daddy??

We started putting up the christmas decorations for Braden this past weekend too... he loves blinking lights, so we got started putting everything up. Braden even got his own little purple-light tree in his room! We will add pics later, but for now, enjoy a few from the parade, and a few more 18 month photos. They used one of these for an IN-STORE display... they put him up as a sample for families to look at!! I will try to go this week to get a pic of his photo on display - but what a compliment that our little man is cute enough to help them sell more product!! Our friends said they saw his pic up this last weekend in the store. Little Jackson will be on display in a few weeks as a sample "Christmas Elf"!

Thanks for your sweet postings last week - what an uplifting way to begin our holiday season, THANK YOU!!

Thankful for the little things...

This post is in celebration of what are "little things" to most families who have a baby making small milestones, they would soon be overlooked and forgotten as the baby moves on quickly to other new and exciting things. But in our house, it's the little things that we celebrate like we would a birthday or winning a race, and evoke such strong emotions that it's hard to put into words. So I will do my best to share with you some of the exciting things we have been blessed to witness in our house over the past few weeks...
1. Remember a year ago when we first introduced Braden to the ocean and a swimming pool? He was not much of an eager participant, to say the least. Well two weeks ago I took Braden into the bathtub with me - and he was so very relaxed. He was so comfortable and enjoying me holding his head while he was floating that HE FELL ASLEEP!! Not only was he sleeping while floating, HE WAS SNORING!!! It was so HILARIOUS!!!
2. Braden is learning how to throw a real toddler fit these days. He is starting to arch his back in protest to whatever activity he is not thrilled with at the moment. We actually have to strap him into chairs, strollers, swings, etc. for the very first time since he was born. When we suction him and he does not want it, he will also bite down and close his jaw so we can't get in! While most parents would be upset over such behavior, we RELISH that Braden is COMMUNICATING his dissatisfaction with the current activity.
3. Similar to the above behavior, Braden for the very first time, began rolling back and forth the other day, WITH PURPOSE. He is able to roll from one side to the other, but these occassions are accidental when he is throwing a fit and getting his legs into it, and the by-product is simply the rolling to one side. He recently started throwing his head back and forth when he is upset and does what daddy & I call the "siren cry". He will toss his head back and forth now on a regular basis in protest. To take this behavior to a whole new level, the other morning, when attempting to suctioning him, not only was he throwing his head side to side, he was rolling side to side, twisting his his shoulders to get away!! It was so neat to see him make this movement with PURPOSE!! :-)
4. Those of you who have seen Braden posture his arms when he is fussing, know that he sticks them straight down, and they cross over making an "X" just above the wrists. Brad and I were thrilled to witness Braden picking up his arms symmetrically like he was doing Superman, or doing the "Y" in the YMCA. He did it more than once, so we just cheered him on... he even looked like a little cheerleader himself!

So that's what is new in our world with Braden, we wanted to share some positive and inspirational moments we have been blessed with lately. We hope they bring a smile to your face like they did to ours! He is such a joy to us, and we hope this little fighter brings some joy to you as well!

The Wilsons (Kodi, Brad, Braden)

Happy Halloween

Boo at the Zoo

Today we went with Jackson and his parents to Boo at the Zoo this morning. We had a great time and the weather was very nice. Everyone got a big kick out of mommy dressed up as Beth to compliment her little DOG:-)

The studio pictures we did at Sears came out pretty good.

The last pic is of the boys taking a cat nap after pictures at Sears... they had a long day! :-)

Trick-or-Treat on Sorority Street

Last night, Braden (a.k.a. "Dog the Bounty Hunter") went trick-or-treating with his buddy Jackson. The Panhellenic council at LSU hosts a safe trick-or-treat evening on sorority row for LSU families. It was fun, and some people thought Braden was a baby-doll, since he had on a wig. I thought that was funny enough - because that's a lot of trouble to go through just to bring a baby-doll trick-or-treating (not to mention a little MENTAL!!) :-)

Our little monkey-friend and our bounty-hunter made lots of friends, and some people got such a kick out of Braden as DOG they took pictures.

We head to BOO at the ZOO on Sunday, again with Jackson, and then on to Sear's, where the whole family will have our memories captured - starring Braden as DOG, Kodi as Beth, and Brad as Leeland.

Stay tuned for more halloween pics next week! Braden is feeling better, but still having trouble keeping his sats where they need to be, so we hope he just continues to fight his way out of this one.

The Wilson's

ER Drive-Through, sort-of

Well, not quite a drive-through, we were there for 7 hours last night. THe pediatrician felt it was best to get a chest x-ray and have bloodwork done on Braden, he just isn't himself with his respiratory pattern, and has had a hard time the past few days keeping his O2 sats up. So we have had 2 very long nights in a row, but we got some steroids and antibiotics and will go back for follow-up antibiotic shots for a few days, like we did this morning, just to be safe. The docs think this is maybe a pre-pnuemonia episode, or just a really bad head cold that won't break loose.

The pediatrician also won't let us take any over-the-counter meds due to all the FDA hoop-la about children's meds dangers these days. So tonight we may try some home remedies like a steam in the bathroom and getting the humidifier going, as even breathing treatments every 2 hours doesn't seem to be enough.

We have him on oxygen, really just to help him rest, as his little body is working pretty hard to breathe easy for today, and maybe the next few - we will see how it goes. Say an extra prayer for our little man to recover quickly like he did a few short weeks ago - we know your prayers were felt here!!

Thanks! The Wilson's

Braden and Jackson - buddies for life

Jackson's mom (Doris) just sent me some of the most adorable pictures of our little men hanging out and playing together, and I just HAD to share them with all of you. Jackson squeals so loud when he plays with Braden's hair, it is so adorable to see them enjoy each other. And do you see how happy Braden looks when they are around each other? It just makes me so happy as a mom of a special needs child to see joy on a child's face who cannot yet express a true smile or laughter. We are so grateful to have such special friends... and later this month you will see these two boys trick-or-treating together, so stay tuned for those pictures!!

Kodi, Brad, & Braden (Baby Bee)

A "Real" Getaway to Florida

We headed to Pensacola Friday to enjoy some R&R over the Fall Break. Of course, no trip of ours is ever without some kind of ridiculous story. As we pulled into Jeannie & Jerry's driveway, we heard a hissing noise, and discovered that somewhere close to our destination, we had picked up a razor blade in our tire. Our best estimation is that a carpet-layer in this post-Ivan recovery area must have disposed of the razor on a street somewhere, and our lucky truck found it. So Brad & Jerry hastily headed out to get it fixed before it went completely flat, as the air coming out of it was not a pinhole, but a large GASH in the tire.

We did, however have a wonderful and relaxing weekend in Pensacola, regardless of the welcome party tire incident. We spent Saturday morning at Jerry's master gardener green thumb jamboree. We got to see lots of local plant varieties and Jerry & fellow master gardner Karen's contribution to "whimsy" with their bottle tree. This is their version of a bottle tree - to add whimsy, but if you research a bottle tree's origins from the South, you will find that it's meaning has deeper roots, and individual meaning. Saturday afternoon Brad & Braden watched the LSU game while Jeannie & Kodi headed out for some shopping. That evening the Patee's treated us to a special meal, complete with birthday cake for Kodi.

Sunday morning we took a long walk along Johnson beach before packing up to head back home. Braden was a hit with his adorable beach wear, and really enjoyed our walk on the beach, as he stayed awake for quite some time to take in all the scenery. Our trip was too short, but we hope to make it back again in the spring for another visit. I know Hampton really enjoyed watching over Braden and letting Braden pet him, so we hope to spend more time with all of them again in the new year. Thanks to our wonderful host family for a very relaxing and enjoyable getaway!!

Kodi, Brad, Braden

A "Weekender" in the PICU

Braden has been ready for some vacation, but unfortunately the little man's idea of what a vacation is supposed to be like is a little skewed due to his vast medical history at the ripe age of 17 months.

Friday afternoon LaTacia the daycare owner said Braden wasn't acting like himself and she was too worried to leave him to go to her own doctor's appointment. When daddy brought him home, as soon as they got settled, we could tell that things just weren't right with Braden. First, he was breathing extremely hard like he was running sprints around the house. Breathing treatments and suctioning were not slowing his pattern down. He also was moving around constantly and being very active (like a normal little boy) - but that just isn't Braden, and it was like he just couldn't get comfortable and was still breathing heavy. Then we saw his eyelids were purple, which is usually a good indicator he is not well. He had a fever that Tylenol was not helping, the valium was not working either, and his skin started getting real mottled/splotchy-looking.

So Friday night we took him to the ER for respiratory distress, and his blood gases showed he was not oxygenating in his blood well, so they moved us to the PICU at about 1:30 in the morning. Although Braden's x-rays seemed normal and white cell count within range, the docs suspect he picked up some kind of virus. They put him on a new machine - VAPOTHERM - which not only pumps oxygen, but is like a personal heated humidifier. This was also the first time we got to use the MEDI-PORT for IV access, so I took pictures to share.

A funny thing about our visit this time, was that we were in a bay closer to the doors (#4), and we kept passing Braden's bay up... as we are normally in a bay that is two down from where we are (#6). A few of our nurses were even doing it:-) The others kept giggling at us doing it... You know we spend a good amount of time someplace to have a "regular room".

We had the opportunity to go to one of the greatest football games of the year (LSU vs. Florida), but Braden decided he would rather see the game from his personal air-conditioned "suite" at Our Lady of the Lake hospital in a PICU bay. By Sunday he was acting pretty normal, and they let us go Monday afternoon.

After our "weekender" at the OLOL PICU, we have decided to show Braden what a vacation is SUPPOSED to be like, as we head to Pensacola for the weekend to spend time with Aunt Jeannie & Uncle Jerry and our furry friend/babysitter Hampton.

At least our last stay in the hospital was FIVE months ago (our longest spell OUT of the hospital), so Braden is getting stronger, and hopefully our stays will eventually get down to less than two a year!! :-)

We will post pics next week from our Fall Break in Florida - love to all!
Kodi, Brad, Braden

Another Fighter in the Family

This past weekend mommy went to surprise Aunt Shala for her second breast cancer walk. This year marks the second time in two year's that aunt Shala has beaten breast cancer, so mommy really wanted to make it special for her.

Aunt Shala was happy that mommy could make it to celebrate with her. Aunt Shala was more surprised about the pink cowgirl hats mommy made for aunt Shala's team to wear. Mommy had to use her quick thinking to figure out how they were going to keep those hats on in 35+ mile an hour winds that day!! So the boas were punched through the hats to create a way to tie them on. Aunt Shala's hat had a tiara, of course, to designate her special day. Aunt Shala even 'took me with her' and pinned my picture on her race number again:-)

They ended the celebration of walks and runs with a survivor's parade, and then the whole team went for lunch to continue the celebration.

Mommy stayed with aunt Shala, cousin Paxton and Gram at the hotel downtown and went swimming, shopping, and relaxed later after a very long day. It was a wonderful weekend, and mommy got to see Nana and Grandpa Wilson too!

My aunt Shala is a fighter, a survivor - just like me.

Hugs for all,
Baby Bee