Headed to KS for Independence Day

We are headed home for the Fourth of July holiday to spend time with our families in Kansas. We are so blessed Nana and Grandpa are bringing us home to vacation, celebrate our wedding anniversary, and watch grandpa go to his NASCAR driving school in Kansas City at the end of the week. We are making a whole family event to watch grandpa drive a real race car. We are flying in June 30th to Wichita, and will fly out of Kansas City on July 8th.

This last weekend we met up with baby Jackson and his momma - we each had a patriotic photo session, and then the mommy papparazzi took our pics together in the stroller. We are buddies, and we are both OK with sharing our space and things together. Jackson is a neat baby with something mommy calls a flirty smile. She makes sure to love on me lots, so I am not jealous at all. In fact, I found it quite interesting to watch mommy hold Jackson while I was chilling out in my stroller. Jackson kept looking at me and then mommy, like he was figuring out we belonged to each other.

Mommy and Daddy are having a good time playing with me lately, as I have started shaking my head back and forth a lot whenever I feel like it, so they like to join in and make it a party. Maybe they can get a video of my 'headbanging' and post it on the internet for next time. I am still trying to sit up more - usually to cough, but I am starting to figure it out and experiment a little outside of that, engaging the ab muscles to peek at something. Maybe some day I will be so inspired to sit up to grab something...

We should have some neat pics to post after vacation - so check back with us soon!
Thanks -
Braden (& mommy & daddy too)

Trip to Houston

We headed to Houston for Father's Day weekend and got to enjoy ourselves and relax a little after some heavy workloads for mommy and daddy at their jobs. The hotel we stayed at had a Mexican soccer team staying there, and fans were lined up outside like they were waiting for a rock star. Then the restaurant we went to had many more players and adoring fans making the place quite hectic. Braden and mommy treated Daddy for Father's Day to dinner at Fogo de Chao. Braden was very good all through the wait and through dinner - our near-table neighbors were quite impressed with Braden's ability to sleep comfortably and soundly in a place that was buzzing like crazy. He took his nap near the wine rack, and seemed to enjoy the sights of the restaurant too, like the glass room where ribs were being smoked.

We saw Braden's neuro guru, Dr. Wilfong. We were able to get some answers to pending questions, but mainly things are status-quo. Braden had not had a seizure since we left the hospital with pnuemonia until this past Friday, but he still has not had more than 6 waking seizures in a day since. The doc says that it is typical for children who have infantile spasms to slowly grow out of them, in spite of all the medications and therapies, and it can be common to see a seizure-free period after a child grows out of them, possibly forever. BUT in our case, that is not likely, and we will probably develop another kind of seizure by the time Braden is school-age, but we could see many years of seizure-free activity. This gives us some hope for his development, as Braden has made some wonderful improvements in this seizure-free period. The doc feels we should start weaning Braden off of his meds, but it will be slowly over time. So for now, we will not increase anything medication-wise, and as he gets bigger this will be a self-weaning process. If we see a longer period of seizure-free activity, we will look at doing a 23-hour EEG study to determine Braden's true seizure status and potentially stopping medications... but who knows when or if that day may come.

While Braden's last EEG done in the hospital a few weeks ago showed significant improvement over previous EEG's, Dr. Wilfong says that this is to be expected, and that's why EEG's and MRI's are often repeated as a child grows.

While we suspected that Braden's "blue episodes" might be autonomic seizures, Dr. Wilfong explained that we can probably rule that out as a possibility, as stimulation seems to bring Braden out of the episode. Since a seizure is something that cannot be stopped, regardless of intervention, it is therefore probably not a seizure. Furthermore, those kinds of seizures occur in children with a different and unexplainable kind of seizure activity, whereas we know ours is related specifically to the brain injury.

We are so blessed to be a patient of Dr. Wilfong's, and barring any change in Braden's seizure status, we will not see him again until early December. We feel that we are in the hands of the most capable medical team possible regarding Braden's seizures, and although it is expensive and inconvenient, we feel that our trips to Houston are worth the efforts. He says that until Braden is about 3, there is nothing additional other than our current plan to add speech therapy, that the best thing Braden can have right now is two parents who shower him with love, expressing that love with touching and kissing and holding him, and continue to provide our little man with the therapies we currently provide.

For now, we are battling another case of the green - so I am sure this will be a continual environmental challenge the rest of the year. Pray that our medical team finds a solution for him that will keep him healthy for longer periods of time... we could use the rest, you know?

Thanks for your continued support & prayers.
Kodi, Brad, & Braden

My new friend Jackson

Last weekend Braden got to meet a special friend - baby Jackson. Jackson has a condition called arthrogryposis - his arms and legs have contractures. Jackson is a sweet and precious little baby who thought it was pretty neat to be around a baby bigger than he is. Braden seemed to enjoy little Jackson and shared his blanket while they napped together. The mommies sat them up to enjoy each other, and they seemed pretty enamored with one another. Mom & Dad (Doris & Jonathan) enjoyed a nice evening cook-out with us. It was nice to spend some time with a family in a situation similar to ours, who has a social schedule like us too - you know, we pretty much stay at home:-)

Braden is still working on tooth #5, he is pretty fussy at times because of it. On a good note, he is holding his head more mid-line and trying to pick it up more every day. While it may be coincidental, Uncle Scott & his girlfriend Patty got Braden a salt ionizer lamp for his birthday, which we put up as soon as we got home from his hospital stay, and we think it is part of the reason we have seen such great improvement in Braden's development, but we don't know for sure. We can't wait to see what our little man has in store for us next!

Surgery Successful

Although Braden was fighting the gooey green monster bug starting this last Friday, we were scheduled Monday for Braden's mediport surgery. His white cell count was pretty high at 25,000 on Friday, but after 3 days of antibiotic shots, by Monday he was "cleared" for surgery, as his counts came back the lowest we have ever seen them, at a mere 8,600!!

The mediport is semi-permanent vein access for shots, IV's, or any time blood needs to be taken. We almost lost Braden a few weeks ago, as the lack of vein access nearly proved fatal for him, so this surgery is one that we really wanted to have done, and had already been discussing with our medical team for some time now. Braden is such a tough 'stick', they couldn't even get access to do the surgery itself! So what is normally a 15 min surgery became an hour, as they took extra special care to ensure there were no problems, and they ended up using the medi-port once it was in to give him fluids in post-op.

Braden gave them a little trouble coming out of anesthesia, but it was a successful day overall. The port sticks up from the skin like a little tumor looking thing, or like he has been working out hard on his pecs on the one side:-) He doesn't seem to mind it, or be bothered much by the incision either... his big fussiness these days are from the fifth tooth that still hasn't broken in. We think that will be the last in this group.

FOR SOME UPLIFTING NEWS... Braden has not had a seizure since we left the hospital from our strep B & pneumonia a few weeks ago, and we have seen some incredible changes and progress in him. He is now turning his head at his own will and even holding it mid-line more, and even trying to lift it up!! He can bear weight on his legs for 15 minutes at a time, and seems to really enjoy that. He is taking fewer naps these days too - probably due mostly to the large decrease in seizure activity. We are just savoring and soaking in every moment with him now, as we see more interaction and "play" (or at least tolerance for it) with him.

We hope to get Braden together with another special baby this weekend named Jackson. If so, we will post pics for you to enjoy. Thanks for checking in on us!

Kodi, Brad, & Braden

Memorial Weekend

We played it safe and decided to spend some family "down time" at home post-hospital stay. We got Braden a baby pool - it's a frog, of course. He seems adverse to the initial introduction of the "new sensation"... but after he got used to it, he seemed to adjust very well and even enjoy it. I think the initial feeling of floating is a little scary for him at first, but then he seems to enjoy the freedom of floating and letting his legs relax in the water. Mommy splashed around with him a good bit, and even dared to "dunk" the little guy. He kept his mouth wide open of course, so mommy had to give him some good back pats to get him to spit out the water. Daddy thought it was mean - but Mommy said we won't know how he will react or be able to teach him if we never do it. I think we'll wait another year before trying that one again, though.

Daddy spent time teaching Braden how to float on his back and playing with him like he was a little boat in th water - it was lots of fun for both.

Thanks for all your recent prayers and notes of support. We are just reveling in every moment we are blessed to have Braden in our lives, and we thank you for being a part of that. We hope you enjoy the pics!

Love -
K, B & B

We are home

We want to thank everyone who has lifted us up in prayer. After discussing Braden's quick recovery and resiliance with his intensivist and nurses - they shared with us that when we brought him in last Friday, that his outlook was not good and they were not sure if Braden would make it. The whole staff at OLOL is amazed that Braden came off life support so quickly, and seemed to rebound with such ease, considering all that the little guy went through just on day one!

We thank God for every day He allows us to watch over the little angel He has sent to us. We know that Braden does not belong to us, and God has appointed us as his earthly guardians, and we feel so very blessed and thankful for that!! Braden has a truly awesome fighting spirit, and I have already learned so much from him. Now at home he is feeling a lot better, and is actually awake several hours throughout the day, as he explores all of his world by contantly looking all around. He is so beautiful - we think he looks like a little cherub!!

Daddy is trying to teach Braden how to relax... hence the photo:-)

We follow-up with the pediatrician this coming Friday, and the surgeon the following week... we have decided that given Braden's rough medical history of trying to get IV access, we will be putting in a medi-port later this summer. We have weighed the risks, and feel the benefits far outweigh them given his situation. We will keep you posted on that schedule, so we can ask for extra prayers, as it will be an overnight procedure and stay.

Thanks a million for your prayers - who knows where we would be without them.

Love to everyone!!

Kodi, Brad, & Braden

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