Photo fun

 Here are a few photos from the last couple of weeks.  Enjoy!

Having spent the entire month of December in the hospital, we did not take the boys to see Santa.  (Actually, Reese has never seen Santa.  We just don't put a lot of emphasis on that.)  Someone that I know told us about a program that was being offered at our local mall for special needs kids so I decided to check it out.  Sunday morning I dressed the boys and loaded them up for a trip to the mall before church.  

The mall was closed at that time, so it was nice, quiet, and empty!  The Easter Bunny was all for our kids.  Families made a reservation for a private time.  There was a table with refreshments and crafts set up for families while they waited.  We were greeted with a special basket that was filled with great prizes.  A lady came to get us when it was our turn and it was just our family, the bunny, and the photographer.  

Brinkley loved the bunny!  He kept staring at him and playing with his bow tie.  Reese had a hard time giving us a true Reesey smile, but he behaved so well.  I was very proud of him!  I give Caring Bunny two thumbs up and we will definitely consider doing this again when it is offered in the future.  I would highly recommend it to parents of other special needs kids also.

Last week we celebrated World Down Syndrome Day on 3/21.  Down Syndrome is also called Trisomy 21 because there are three copies of the 21st chromosome, hence the celebration of it on 3/21.  Supporters are encouraged to "rock their socks" on this day.  Blue and yellow are the colors that represent Downs awareness.  You'll notice Brinkley rocking his yellow and blue socks!  

A quick update on Project Brinkley.  After being told that some postcards had been returned, we discovered a problem with the church's post office box.  The post office has since remedied the problem and we should not have any more issues.  If your card was returned, please try to resend it now.  Thanks!

A Little Video Fun

A little time with Daddy

He loves his blanket (don't tell him it's a bib)

Project Brinkley Update

Project Brinkley is underway and the cards have started arriving!  Brinkley received his first international one this week.  

Thank you to our wonderful friends who are serving in Germany.  Your package made our day!

In case you missed it, here's the story on Project Brinkley:

We need your help! People all around the world (literally) have prayed for Brinkley through this journey. We want him to know that and to know you. I would like to create a memory book for him and we want you in that book. If you or someone you know has been praying for our family during this time we would like to ask you to do a little something for us. Please take sometime next time you are out and find a postcard from the place that you live (generally you can find them in Walmart or a drug store). Be sure to put your name on the back and any message that you would like to add. I'll collect the postcards and put them into a book that we can share with our boys. Just think how cool it will be to show both of them how loved they are by people that they may have never even met. Thanks for indulging me and sending your postcards.

For the sake of safety we would ask you to send the postcards to our church address so that we do not have to post our home address. If you know our home address, feel free to send your postcards there. Otherwise, here's the address:

Brinkley Holder
c/o Marathon Church Pickens
PO Box 837
Pickens, SC 29671

Kryptonite

I have a problem.  It's a problem that has plagued me my whole life.  It is not always a bad problem, but it is one that is hard to overcome.  What is this problem you ask?  I am a people pleaser.  I don't ever want to rock the boat and I often let people or circumstances run over me in an attempt to avoid a conflict.  It is very hard for me to speak up or stand up for myself.  If it comes to the point that I have to address an unpleasant situation, I will do my best to be as polite, tactful, and non confrontational as possible.  

I've never been able to decide if this is a blessing or a curse.  Honestly, I think it falls somewhere in the middle.  During this last hospital stay it has proven to be a stressful problem to have.  

Being admitted at GHS on Sunday, February 24th seemed like it would be a less stressful event than being sent back to MUSC.  I could go back and forth from the hospital to take care of my family.  Drop off and pick up from school wouldn't have to change.  Nighttime routines wouldn't have to change, etc.  Seemed like I could get the best of both worlds, have both of my boys get the care they need with our whole family in the same area code.  

You would think I would have learned by now that nothing is as easy as it seems.  This mystery illness of Brinkley's continued to linger with no mention of when we may be able to go home.  The PICU staff at GHS is amazing and I can't say enough GREAT things about Dr Bradshaw, the resident that took care of Brinkley.  This makes a stay easier, but not easy, and this is where my people pleasing began to get in the way.  One night after getting Reese fed and in the bed I went back to check on Brinkley and meet his night shift nurse.  I was not impressed with the nurse to say the least.  As a matter of fact, I was a little nervous about leaving him that night.  

In the past we have had nurses that I did not care for their personalities  but this was different.  I was concerned that my child wasn't been properly cared for and I have never felt like that before.  I came home and told Bryan what had happened and he too was concerned and we discussed if I should go back.  I assured him that I would address the issue with the doctors in the morning and that I tried to point somethings out to the nurse before I left.  I'm not sure how much faith he had in me "telling on" someone, but I have a witness to prove I did.  When Dr Bradshaw checked in with us that next morning I spoke with her about it and let her know my concerns.  She was incredibly understanding and assured me that it would not be a problem again.  I was even bold enough to come back the next day and ask her to make sure we were not assigned that nurse again.  She gladly took care of it for me.

Friday evening Brinkley was moved from ICU to a regular room in the Children's hospital to ride out the remainder of this mystery virus.  Let's just say that we have become a little spoiled with only ICU care and had no idea how a regular room worked.  After three days and three nights of us giving B round the clock care I had met my limit.  The frustration and stress had reached its maximum.  I didn't understand why our lives were being turned upside down to be on machines that we have at home and for me to stay in a hospital room to take care of my child like I do at home.  Nurses would give meds and take temps and blood pressure, but otherwise all care was up to us.  

Poor Dr Raunikar called the room and I couldn't keep my game face on anymore.  For the first time since all of this started, I had a meltdown with someone besides Bryan.  Unfortunately for Dr Raunikar he caught me at my moment of weakness and I sobbed and sobbed on the phone with him.  He was very understanding and compassionate and quickly sent his partner, who was at the hospital, over to see me.  After evaluating Brinkley and asking me many questions, Dr Horne agreed that I could manage Brinkley's care at home just as well as at the hospital.  He promptly spoke with the doctors and nurses and we were soon out the door.  

Brinkley and I made it home early Monday evening.  Yesterday we followed up with our pediatrician and made a follow up appointment with Dr Raunikar.  So far so good.  Dr Raunikar called yesterday to check on us and I could not apologize enough for my episode on the phone.  As is his style, he assured me that I had no reason to apologize and told me about a similar incident he had with one of his own children.  

As hard as it is, I am learning that people pleasing isn't always what's best for me or my family.  I am having to pray for the courage to speak up for myself (and my family) and the wisdom to do it tactfully.  I'm learning more everyday about just how human I really am and that I can't be superwoman all the time.  Just like superman, everyone has their kryptonite and apparently people pleasing is one of mine.

For your viewing pleasure

Here are a couple of videos that I got of Brinkley over the last few days.  Enjoy!

Brinkley did make it out of PICU into a regular room this afternoon.  We will miss Dr Bradshaw, Ms Kay, and Ms Anne but we are glad that this means we are one step closer to home.  Moving out of PICU makes things a little tricky for us.  In PICU the children are monitored closely.  On the floor they are checked occasionally, but families are expected to do the majority of care.  This means that we will need to stay with Brinkley as much as possible.  Pray for us as we figure out how to make this happen for the remainder of his stay.  

*Be sure to check out Project Brinkley.  We'd love to have your help!*

Change of scenery

Yesterday came with a different attending doctor on duty in the PICU.  Dr Avant was taking over for Dr Seigler for a few days.  Dr Seigler told me on Wednesday that he would confer with Dr Avant about Brinkley and let him make the call on a diagnosis.  After reviewing everything and having yet another chest x-ray.  Dr Avant has determined that Brinkley has a respiratory virus.  (He is negative for RSV.)  He may be aspirating with his reflux, but that is not the primary cause of his current O2 problems.  

Dr Avant also determined that there is no need for Brinkley to stay in PICU since they are weening him off of the O2 and he no longer needs to be on a heart monitor.  We expect that he will be moved to a regular room sometime today.  We will ride out the rest of this virus there.  Unfortunately, Brinkley has two things working against him in the recovery process.  Dr Seigler talked to me about the fact that children with Downs recover very slowly from any type of pulmonary issue.  He said that research is inconclusive as to why this happens, but it likely has to do with the muscle tone issues.  Dr Avant added to this conversation that the respiratory things that are currently going around are lingering for everyone, even for otherwise healthy people.  He said that many people are symptomatic for a couple of weeks.  

We are tweeking the treatment of his reflux a little to see if that helps with the possible aspirations.  Otherwise, we are just riding this out.  The change of scenery today will be a little bittersweet.  It does mean that we are working our way closer to home, but it also means less monitoring for him and learning a whole new set of people.  

If you missed the post about Project Brinkley, please check it out and consider participating.  We would love to have you be a part!