Friday, November 30, 2007

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

Tuesday, November 20, 2007

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

Monday, November 12, 2007

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!!

Saturday, November 03, 2007

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)