Team Brinkley: How to register

The moment you've all been waiting for is here!  (That may be a little exaggeration!) 

Our donation sites are up and running for Team Brinkley.  The first 50 people that donate $10 or more will get a Team Brinkley t-shirt.  After those are gone, additional ones will be available for purchase.  Orders have to be placed by September 18th to have the shirts for the Greenville Buddy Walk.  Here's a look at our awesome shirts:

Thanks to Jamie Crumpton for designing them for us!  Friends of Brinkley provided the shirts that are being given to donors.  The money collect for the first 50 goes toward meeting our goal of $500 for the two walks.  If you haven't yet donated and registered to be an official member of Team Brinkley you will find the appropriate links below.  Thanks to another generous friend of Brinkley we will be exceeding our goal for the Anderson walk and hope to do the same for Greenville.  The gifts are tax deductible and I can provided you with info for donating with a cash or check if you prefer not to use the online options.  

Anderson Team Brinkley:

Facebook group to keep you informed  https://www.facebook.com/events/553425534721052/

Registration and Donation site  http://www.firstgiving.com/fundraiser/BrinkleyHolder/2013-anderson-buddy-walk

Greenville Team Brinkley:

Facebook group  https://www.facebook.com/events/221282864690109/

Registration & Donation site  http://www.dsfagreenville.org/buddy_list/brinkley_holder.html



After making your donation send your t-shirt size to projectbrinkley@gmail.com.  We can't wait to see you at the Buddy Walk!  Pass the word along and help Brinkley and his friends take Downs to new heights!

In and Out

Three days.  That's how much I packed for our trip to MUSC last week.  I told Bryan that I was only packing for three days because I was trusting that this would be a short trip.  After our visit in July with Dr White, we were scheduled to have an MLB on Friday, August 23rd.  Dr White had prepared me that Brinkley's tonsils are enlarged and may need to come out.  This procedure would help him determine if the tonsillectomy would be necessary based on how severely they were contributing to the sleep apnea.  If it were necessary, he would remove the tonsils and adenoids following the scope.  

We were a bit concerned since Dr White, along with our therapists and nurse, had warned us that this would a tough recovery for B and would probably set him back.  Dr White had also told us to plan to spend the night in PCICU following the procedure so that they could monitor B.  

Thursday evening Brinkley and I headed to Charleston and prepared for our early morning.  We checked in at 7:45 am and soon headed to the holding area (PACU) and met with the various teams involved in the procedure and then they took him away for anesthesia.  A little while into the procedure Dr White called into the waiting room to tell me what he had discovered and get permission to proceed.  Thankfully the tonsils and adenoids were not interfering with the apnea, but the glottis was.  This is a condition called Laryngomalacia and required a procedure called Supraglottoplasty.  When the procedure was finished, the doctor came and escorted me to the PCICU to see Brinkley.  He explained what he did and said that everything went well.

I was excited to see that sweet Liz was our nurse.  She is one of our favorites in the unit and is wonderful at explaining everything to you in a way that you can understand.  Liz and the doctors were quite impressed with how well B was doing and soon moved him to 8D where we again had wonderful nurses who have cared for Brinkley before.  Everyone was talking about how much he has grown since our last stay.  

Because everything went so well, there were no restrictions on Brinkley and we planned to be discharged the following day.  We were held up with a leaky feeding tube and crazy weekend hours for the pharmacy, but we left the hospital late afternoon on Saturday.  One night!  Only one night!  I couldn't believe it.  My little guy had a procedure go smoothly and we were in and out in one night!  

As we were preparing to leave, I kept thinking back to the drive in.  We drove through some bad storms in Orangeburg and I happened to notice a rainbow.  Watching the colors intensify as I drove I thanked the Lord for his faithfulness and took it as a reminder that He had heard my cries for a smooth procedure and no set backs for Brinkley.  He was faithful and got us in and out of there.  

Thank you for your prayers for Brinkley during the procedure!  God is faithful and we are excited to see how this helps with his respiratory issues.  

Team Brinkley: Buddy Walk and Golf Tourney Update

Here's a quick update on Team Brinkley:

We have a shirt design!  

We are still working on cost, but I will post that as soon as we have the final numbers.  

The Buddy Walks are getting closer and we still want you to be a part of Team Brinkley.  Both walks are approximately one mile and there will be lots of activities for kids of all ages.  Our team goal is to raise $250 for each walk.  All donations are tax deductible, so let me know if you want to sponsor Team Brinkley.  Your name will be on our banner for both walks and every donation helps no matter how big or small!  

You can email me at projectbrinkley@gamil.com for more information.  

If you are a facebook user, you can join Team Brinkley there by using these links:

Team Brinkley: Greenville

https://www.facebook.com/events/221282864690109/

Team Brinkley: Anderson

https://www.facebook.com/events/553425534721052/

We are still working on details for the golf tournament, but the date is Saturday, November 2nd at Smithfields Country Club in Easley.  You can contact me at projectBrinkley@gmail.com to get on the mailing list for info as it becomes available.

Milestones Galore

It's a quite the happening place here in Holder land.  The little guy has learned to roll over and has discovered that this a viable means of moving about the house.  We keeping finding him in the craziest places.

Here he is under the couch.  We had to lift the skirt to find him!

With this new means of "transportation" he is quite adamant about having plenty of time on the floor to play and explore.  He is oh-so-close to sitting up on his own as well.  We can get a few seconds of steadiness at a time.  My hope is that he will be able to sit for a fair amount of time on his birthday, and that birthday is just a few weeks away!  As you can imagine, I have been working away on plans for Brinkley's big bash!  We are so proud of the progress that he has made and we are so blessed to have such a wonderful team of medical professionals that have helped us get there.  

Tomorrow Brinkley and I will be headed to MUSC for the weekend.  He is having a scope on Friday morning that could potentially be followed by the removal of the tonsils and adenoids.  His tonsils are enlarged and may be contributing to the sleep apnea.  If they are significantly affecting the apnea, they will be removed.  If not we will continue to watch them and reevaluate at a later time.  We are hoping that this will not be necessary as all of our doctors have said that it would be a very rough recovery for Brinkley and would probably set us back quite a bit.  He is doing so well with his therapies and his eating that we don't want to see him lose the progress that he has made.  

Mr Reese has had a big week.  My wild man started kindergarten on Monday.  So far he has enjoyed it and has had green smiles everyday on his behavior report.  We are trying some meds with him and he is excited about starting therapy next for help with sensory processing and controlling his anxiety.

Please join me in praying that Brinkley's stay in Charleston will not stress Reese out and that he will be able to stay focused on doing his best at school.  Also pray for Bryan as he will be managing work and school with a potentially anxious little man.  

Surprisingly everyone held it together on Monday morning as all four of us made the long walk to Reese's class.  He seemed a little nervous (as you can see in the picture above), but he did great.  Bryan didn't even shed a tear.  I must admit that pick up was rough though.  As I sat in the car line my stomach was in knots and I felt nauseous.  I nearly burst into tears praying that he had had a good day and enjoyed school.  It didn't help that he didn't understand when to get in line and a teacher had to go look for him.  As she walked him to the car the solemn look on his face made me even more nervous.  

I asked him about his day and he said, "Mommy, I'm never going back there again."  My heart sank until, in true Reese fashion, he said, "I'm just kidding!  It was great!"  His two complaints were that they had to wait too long for lunch and "they don't have any mattresses, bed-rolls, or blankets, or anything."  Overall, I'd say it was a success!

I love my boys and can't believe how they both grow and change everyday.  It is such a blessing to be a part of their story.  

So what's next?

Last Monday we made a trip to MUSC to see Dr White the pediatric ENT.  Dr Shippey, our sleep specialist, sent us there to determine if any ENT issues could be contributing to Brinkley's sleep apnea.  (There are no ENT's locally that specialize in pediatrics and with Brinkley's intricate issues we feel most comfortable with doctors who are trained to work with special needs kids.) 

The conclusion is that Brinkley does have enlarged tonsils.  To determine if this is causing problems we will be returning to MUSC at the end of August to do a sleep scope of his upper airway.  This will require him to be sedated, so he will be spending the night in the PCICU.  Dr White will use this scope to decide if it will be necessary to remove his tonsils.  If the tonsils need to come out that surgery will be done during this visit as well.  

Hopefully there will be a way around removing the tonsils since Dr White warned that this would be a tough recovery for Brinkley.  Despite what may come up, I know that God has a plan and it will all come together.  

The rest of the week proved to be quite eventful.  Tuesday we spent time at therapy and both boys saw the pediatrician.  Reese for his yearly check up and Brinkley to follow up on his ear infection.  Reese is in the 85% for height and 93% for weight.  Brinkley on the other hand was in the 0.04% for weight.  However, he has finally broken the 14 pound mark and was a whopping 14 lbs 4.5 oz.  I feel like I have Mutt and Jeff.  

Wednesday Brinkley was really puffy so I was on the phone most of the day with doctors and nurses in an attempt to figure out why and how to handle it.  This led to us being in the pulmonology and  cardiology offices from 8:15 am until 2:30 pm on Thursday.  We had x-rays, lab work, EKG, and an echo.  After some changes in medication we were sent home.  Friday Bryan and I took Reese back to school shopping for kindergarten.  Where has the time gone?!  I can't believe my Reesey is heading to real school.  

Despite the looks of it, it really wasn't that traumatic.  He is quite the ham for the camera.

Saturday was the highlight of the week.  Brinkley had been vomiting off and on since Thursday evening and had a fever off and on all day Friday.  I called the pediatrician's office and was advised to take him to the ER for fear that he may be dehydrated.  As I was trying to get myself and the boys ready to head to the hospital I heard Reese start screaming.  He ran into the living room and his hand was dripping blood. 

After convincing him to show me how he hurt himself, he showed me that he had gotten one of Bryan's EpiPens and shot himself in the hand with it.  This may not seem like a big deal, but in reality this was the most dangerous thing he has ever done.  The EpiPen is a shot of pure adrenaline that is used to temporarily stop the effects of a life threatening allergy.  (Bryan is deathly allergic to stinging insects.)  If it is used when not needed, it can essentially make your heart explode.

I called Bryan and then EMS.  Paramedics soon arrived and determined that Reese only scratched himself with the needle and did not actually inject the medication.  We quickly rushed off to the ER with Brinkley to learn that he appeared to have a stomach virus and was mildly dehydrated.  We were in the ER from about noon until 8:00pm.  It was a LONG and EXHAUSTING day to say the least.  

Brinkley has not had anymore vomiting or fever and we were quite glad to see this week come to an end.  Today has had some adventure of it's own as I have been on Sleep Patrol all day.  Stay tuned for the details on that when my patrol has come to an end!