Cleft Clinic Donation

 The kids giving blankies to Nurse Nancy at Cleft Clinic so they can be given to new cleft families.

  Tom and Connie Norden gave a monetary donation so I could buy more supplies and continue to make blankies for cleft clinic as a way to reach out to others.  

Summer Vacations

Hocking Hills

Let's Zip Line!

 Niagara Falls, Canada

Pharyngeal Flap Surgery

So this surgery was a hard one!  I haven't seen my little man in so much pain since his palate repair when he was one.  The pharyngeal flap surgery was to help correct his speech and prevent him from losing air through his nose when he talks.  Surgery was in Columbus and he stayed overnight.  He was in quite a bit of pain and needed pain meds every few hours to help manage the pain right after surgery.  Recovery consists of soft diet for 3 weeks, no speech therapy for 3 weeks during recovery, and no sports/low activity level for 3 weeks as well.

 Walking into the hospital the day of surgery like a champ!

 Picking a prize from the ocean room

 Recovery...

 At home a few days post op

Grandma always gets the best gifts :)

Happy 8th Birthday!!

Nationwide Children's Cleft Clinic

So after our last visit to cleft clinic in Toledo we were told to follow up with the pediatric oral surgeon to check the status of Bubba's dental development to see when he would be due to get his bone graft surgery.  After many road blocks locally due to physicians retiring, new physicians starting and not yet being on our insurance panel, we decided to go to Nationwide Children's Hospital in Columbus to get him evaluated there.  I don't regret this decision.  Although we have to travel 2 1/2 hours now for these visits, I was very impressed with the quality of care we received.  As it turned out, Bubba has very delayed dental development and will not likely be ready for the bone graft surgery for at least another year or so.  Meanwhile, while assessing Bubba, the new team found some other concerns that needed attention.  One issue noted was velopharyngeal insufficiency requiring surgery in order to improve his speech and the other issue was a fistula in his palate, also requiring surgery in the near future (otherwise his future bone graft surgery may be rejected).  Although this news was unexpected and hard to swallow, I am so glad time hasn't slipped by without these issues being addressed.  I want the best for my son and his future, and although it pains me to see him go through all of this, I know that in the long run it will be worth it for him.

Urethral Surgery

 Bubba was born with a hypospadius which was repaired when he was 9 months old.  Recent urinary staph infections and some other symptoms led us to believe something was wrong.  Turns out he had a fistula that needed to be repaired.  So...another surgery!

7 (and a 1/2) years later...

Sorry for the big gap in postings.  Life has been very busy to say the least.  All I can say is that it's a different kind of busy as your little one gets older.  School and extracurricular activities seemed to replace the running around after the toddler, but I'm happy to report Bubba is doing well.  We have had some medical battles this past year unfortunately, but we are hoping that after his surgery next month the urinary issues will be resolved.  He has had some ongoing staph UTIs so he will be having reconstructive surgery in November.  Bubba also had another set of ear tubes put in this year as his hearing had taken another nose dive when the prior T-tubes fell out.  Conductive hearing loss impacted his learning and performance at school significantly so the tubes were a necessity.  Recently he attended Cleft Clinic and we were told his next palate surgery/bone grafting will be approaching soon.  We have x-rays scheduled soon to give us a more definitive time frame.  I've gotta say I'm really nervous about this.  It's interesting to note that the older my son gets the more inquisitive he is at these appointments.  So not only do I get to absorb the information, but I get to answer questions such as "Why do I have to have surgery on my mouth again?  It's fine."  "Why are they going to take my bone out of my hip?  If they do that I will die mom!!"  It's never ending, but I assure you, as a parent you will find the right words to help them through this.  At least I have so far, and by the grace of God I will continue to try my best.

6 years goes by so fast!!!

Brandon continues to want to be referred to as Bubba. He is doing well overall. Sports continue to be his passion and he pushes himself to be the best he can be. He won several wrestling medals and trophies this year and overcame his fear of wrestling kids that are bigger than him. He is in kindergarten on an IEP which is helpful. He is struggling with language comprehension at school but interventions are in place to help him succeed.  He recently had some hearing problems again so T-tubes replaced his previous ear tubes to help correct the problem.   He has returned to Kellogg Eye center at U of M for some vision issues. Waiting to hear more about vision status at his follow up. We are doing some patching of one eye 14hours/week currently.  He continues on his nightly growth hormone injections. Cleft clinic is still once a year. No new surgeries for cleft repair scheduled at this time.  We all love him to pieces!!

5 Year Update

So we have hit our 5 year mark and it is quite surreal to me.  Time flies by so fast.  Brandon remains a very active little guy.  He has played various sports, the newest being wrestling.  Unfortunately Brandon has added a new scar to his face (not surgery related) after an unfortunate accident involving the kids playing golf outside.  He handled this like a champ as he has with everything else.  Every day he continues to amaze me.  He continues his growth hormone injections daily and is making good progress with his growth and development.  We continue to follow the Ear Nose and Throat Doctor after his second set of tubes had been put in.  Looks like we may be visiting the eye doctor again shortly as we are questioning some vision concerns.  He is getting ready to start kindergarten in the fall so his preschool is getting ready to test him again so he can remain on an IEP in kindergarten and continue with speech and occupational therapy services.  No new scheduled surgeries at this time.

 This is going to leave another scar :(

 Taking it like a champ!

 Halloween 2012 - Brandon as Handy Smurf bottom right corner

 First wrestling weigh in 38#

 Super happy after his first tournament with several wins :)

 Daycare friends celebrating Brandon's 5th Birthday

5 Years Old

Don't call me Brandon, my name is BUBBA!

Brandon has said this to me more than a dozen times.  We have always called him Bubba as a nickname, but apparently we have done this so much he insists his name is Bubba and not Brandon telling me he doesn't like the name Brandon anymore.  I guess Bubba Burditt is a great pro athlete name ;)

 Taking in the view of the BGSU football field

 50 yard line at his Pro Bowl game - NFL Little League

End of Football Season

Sports..sports...sports....

This little fellow is a busy guy.  He LOVES his sports as I'm sure I've mentioned several times.  Currently he is playing in 3 sport leagues which consist of flag football, soccer, and coach pitch baseball.  This is in addition to weekly speech therapy...WOW...BUSY!!  Not only does my little guy have some mad skill, but his heart is in it 100% too.

Surgery time...

Surgery to get bilateral ear tubes inserted again was a success.  As Brandon is getting older he is definitely more aware of what is to come.  Even though I was trying not to tell him where we were going until the last possible moment, I'm sure he sensed it.  He was more "clingy" than usual when I woke him up, he told me he loved me several times, and when I told him we were going to go see the doctor about his ears he immediately said "NO SHOTS!".  We were fortunate that Brandon didn't have to get an IV for this procedure, they just used a mask to put him under anesthesia since it was a short procedure.  Even though I knew this was a pretty simple surgery, seeing my baby wheeled off to the surgery room and watching him wave Bye to me was tough.  I'm happy to say everything went well and my Bubba is back!  Doctor said he had some really thick fluid in his ears that has likely been a huge contributing factor to the hearing loss Brandon has shown recently.  We will follow up in 2-3 weeks for another hearing evaluation and check up and hopefully we will see some improved speech as well.  I can already tell a difference in his hearing as he heard someone whistling in the background on TV and asked me if I was whistling.  Love him!

Honory Ribbon Cutter

Harbor, my employer, just expanded our Developmental and Behavioral Pediatric Center which is my department ;)  We now have a new building which looks great and is much closer to home for me.  We are part of the Autism Collaborative her in Northwest Ohio and I'm excited to see us expand further and service a well needed population.  Brandon was asked to be part of local commercial advertising our services and later as our Open House came near he was asked to be the Honorary ribbon cutter at the ceremony.  Super cool and he was so excited.  Those were some BIG scissors, with a little help from mommy he handled it like a champ!

Back with the ENT

Brandon's private speech therapist had voiced some concerns that Brandon may having a hearing problem. While he does say "HUH?", and "You talking to me?" often, we generally thought it was just because he needed things repeated at times to process the information better. He had passed all of his hearing screenings, but due to the concerns reported we had the school bring in an audiologist to test Brandon's hearing. Based on that audiologist's evaluation they recommended we follow up with the ENT again as they noted some possible conductive hearing loss. I rescheduled with Brandon's ENT whom we hadn't seen in 2 years. Apparently I was supposed to be following the ENT every four months until his tubes fell out, but due to all of his various appointments and the fact that we were seeing his pediatrician so often, I figured we would just go back as needed. I didn't feel that paying a copay to be told "Yep, he still has one tube in place" was necessary when his pediatrician was monitoring this at all of Brandon's visits. Anyways, we are back now and they did a hearing test in a booth as seen in the picture above. As it turns out, they found Brandon to have a 35 decibel hearing loss in one ear and 30 decibel loss in the other ear. This is likely due to fluid and/or wax in his ear canals preventing his ear drum from vibrating properly. Treatment recommended...new set of ear tubes. Now we are just waiting for this minor surgery to be scheduled in the next couple weeks. We may find that Brandon's speech greatly improves after this as they said he is most likely hearing things as if he were in a tunnel.

Dental Procedure...

Well, Brandon has been seeing his Pediatric Dentist since he was a couple weeks old. We typically go every 3 months for fluoride treatments and every 6 months for cleanings. We have to monitor his teeth very closely as they are not all coming in as they should. A couple of his teeth are in between part of his remaining cleft palate...most of his palate was repaired at 13 months, but the rest cannot be corrected until he receives his bone graph later. Kids with clefts need extra dental attention. As this past visit turned out, there was a "defect" noted in one of Brandon's canine teeth which could develop into a cavity if not corrected, so Brandon received his first filling and did FABULOUS!! I'm so proud of him.

Brandon Turns 4

Lego and Angry Bird Cake Pops (as requested by the birthday boy)
Sylvania Playland birthday fun.

Just hanging around...

Waiting for one of his birthday surprises.

His new big boy bike from Grandma and Pop Pop...he was in love. I'm predicting he will be riding it without training wheels by the end of the summer. :)