Detour

Yesterday we headed to Columbia to begin celebrating our nephew Jamie's wedding weekend.  It was evident immediately that something wasn't right with Brinkley.  I checked his 02 level and he was at 84 with his supplemental oxygen.  He should never go below 90, so this concerned me.  After giving him a breathing treatment and not seeing much change I called his Pulmonoligist.  He was very uncomfortable and struggling to breathe.  They advised me which hospital to go to.

Not being familiar with the area, I felt it was best to call ems.  An ambulance arrived and we were off to Richland Memorial.  After a long day in the ER we were admitted to Palmetto Health Children's Hospital.  The doctors think he may have a virus and say that we will be here at least until Monday. 

The attending doctor told Bryan this morning that his fiancee is the doctor that most recently treated Brinkley at GHS.  It always amazes me the ways God continues to weave our story. 

It makes me so sad that Brinkley won't be able to attend the wedding.  The nurse has assured us that it is fine for us leave Brinkley while we celebrate with Jamie and Stephanie.  They've even offered to have a nursing student possibly sit with him. 

Though this is not the way we thought our weekend would go, we know that God has a plan and it is perfect. 

Another Lesson From the Cart: What Not To Say

After loading all of our things on to a cart and heading down the elevator of the children's hospital I couldn't wait to get Brinkley in the car to go home from our latest stay at GHS.  (We have now hit the 23 week mark.)  The young man from the transport team waited on the sidewalk with our cart as I pushed Brinkley, in his  stroller, toward the parking deck elevator.  While waiting on the elevator a lady (probably in her 50's) joined us and started talking to us.  She told me that she has an infant niece that is a special needs child.  The little girl has some sort of problem with the formation of her brain.  

The lady went on to tell me that the Lord could and would heal her from this problem.  She gave me the impression that she wanted to know what was wrong with Brinkley since the nasal cannula and oxygen tank aren't normal accessories for an infant.   It seemed as though she was afraid to ask, so I thought I would help her out.  "He has Down Syndrome."  Her response, "The Good Lord can heal that too."  I wasn't quite sure how to respond so I politely smiled and kept pushing B toward our car.  

I understand that the lady meant well and probably firmly believed what she said to me, but it struck me rather oddly.  Much like the many responses of "I'm sorry" that we have gotten over the last year, this was not something that I wanted to hear.  So many people have no idea what to say to someone when they find out that their child has special needs.  I know I didn't before I got the unexpected invitation to join this elite club.  I will be the first one to tell you that it is hard to grasp the fact that this precious child you are expecting (or have given birth to) is going to have a life long disability.  

In those brief seconds following the well meaning lady's comment two things ran through my mind.  One was that she apparently has no understanding of Down Syndrome.  Though I have a strong faith and believe that my God can do anything, I also know that Down's is not an injury or an illness.  It is not something that can be corrected.  It is a part of the genetic makeup.  I firmly believe in miracles, but I don't think that God is going to miraculously change my child's genetic makeup.  My second thought was, I don't want him changed.  He is just as God intended him to be and he wouldn't be Brinkley otherwise.

Parents of special needs kids don't want to hear "I'm sorry".  Trust me, we've spent plenty of time feeling sorry for ourselves.  After we get through our mourning period, we want to move on and love our kids and give them the best that we can.  We don't want to hear, "Special people are chosen for special kids."  If being special means having the craziness that our family has been through over the last year, then I don't want to be special.  I want my family to be normal.  I want my five year old to have Mommy and Daddy at home and not think that Mommy lives at the hospital or that I love Brinkley more because of all the time I have to devote to his care.  I don't want my infant to have spent 23 of his 38 weeks of life in a hospital room.  

Special needs are not something that anyone wishes for, but when we as special needs parents come to terms with the shift our lives have taken, we are free to see the beauty in our kids and embrace the journey.  As rough as it may be, it is filled with beauty and I wouldn't trade the opportunities that I have had for anything.  I love this little guy in a way that I could never explain and his smile and determination inspire me everyday to keep pushing through.  

Last June, after receiving our official diagnosis, I got a call from a support parent that the genetic counselor connected us to.  Her first words to me, "Congratulations!"  I was caught just as off guard as by the lady at the elevator.  It took a while for it to sink in, but now that precious lady has become a dear friend and I can't thank her enough.  As the parent of a preteen with Downs, she knew much about the journey that we were embarking on.  She is an invaluable resource!  

With that in mind, I want to encourage you of what TO say when you meet one of us.  As I learned from my sweet friend, "Congratulations" as awkward as it seems at the moment is an incredible reminder to the parent.  Our children are a blessing just like children that don't have special needs.  We are just as proud of them as we would be of a typical child.  They deserve all the hoopla and love that any other child would receive.  Another friend's response to my husband, "That's awesome!"  Though we didn't know it at the moment, it really is!

If you want to be incredibly helpful to the family pray for wisdom for them as they will need to build a support network.  Pray for them to build the right care team and connect with other families.  Some friends of ours came to us within a few days of our announcement and told us that the husband has a preschool aged cousin with Down's.  They had talked with their family and wanted to introduce us to each other if we were comfortable with that.  This was so helpful!  The little girl not only has Downs, but also has a heart defect that was treated by the same team that would be caring for Brinkley.  No one wants to (or has time to) reinvent the wheel when dealing with a special needs child, so connections with those that have been there and done that are wonderful!

So, offer your congratulations and offer your help.  Offer to help the family connect with others you know.  Offer to babysit their other children during the MANY doctor appointments.  Offer to bring dinner or cut their grass, anything that will give them time to spend with their family and just feel normal.  Tell them about an awesome person you know that may share their special need.  We always need encouragement!  Ask if there are other ways that you can support them.  Every family is different, so just ask.  They may not be at a place yet where they know exactly what they need, but knowing you are willing makes a huge difference.  

Take it from this mom, every little bit helps!   

GHS update

Unsurprisingly, we made our way back to GHS on Saturday afternoon and we find our selves admitted once again.  These respiratory issues are kicking my fanny.  We are on the floor so I am having to stay all the time.  I don't mind (I actually like the quiet), but I am desperately in need of sleep.  I think the last time I slept all night was during my trip to Memphis in April.  

Brinkley has had quite the work up today.  He's had blood work to test for allergies, immune system issues, and some viral and infection screenings.  We just returned from a chest x ray and are waiting to hear back from Sleep Medicine about home care for his newly diagnosed sleep apnea.  Needless to say, he is worn out!  We will continue to hang out here as his oxygen requirement is rather high right now.  

As for Reese, we are working to regulate his new medication that is to treat his anxiety and behavior issues.  So far the medicine is helping to keep him calmer, but it is making him extremely emotional.  I am not sure what is worse bouncing off the walls or the constant crying.  We'll keep working until we figure it out though.  

I keep looking for my opportunities to love on people here while we wait.  Today I have a box of cupcakes to share with the nurses.  I hope they enjoy!  

Please continue to pray for our boys.  My biggest prayer right now is that we can get Brinkley healthy and out of here in a couple of days.  Reese's birthday party is this weekend and I have so much to do to prepare.  Please pray for me as I try to figure out how to balance it all.  

Looking Back

Brinkley was discharged from the hospital on Wednesday morning.  We left with no new information and on continuous oxygen.  This means that we are, in a sense, worse than before.  I would rather have my baby at home on 02 rather than living in the hospital though, so I guess it isn't so bad.  

We did find out that he has severe sleep apnea.  After a 2 1/2 hour visit with Dr Shippey yesterday we returned to the hospital last night to be observed in the sleep lab again.  This time he wore the mask and used a cpap machine.  The techs observed him all night and watched his numbers to see what settings work best for him.  We will return to Dr Shippey next week to actually get our machine and start using it at home.

On a bright note, he turned 9 months yesterday and has finally hit twelve pounds.  We saw Dr Everman, our genetic specialist, after leaving the hospital on Wednesday and he says that we are on the right track and covering our bases for now.  Even better is that our Jeremy (my nephew) returned from his year long deployment on Tuesday.  Last night Brinkley got to meet him for the first time!  

We are being referred to an ENT at MUSC to continue working through Brinkley's breathing issues.  We hear that a pediatric ENT is coming to Greenville soon, but right now we don't have one, so we'll be commuting for those visits.

The last year has been a wild ride that I could have never imagined.  This week I looked back at my journal and wanted to share with you where we were a year ago today.  

June 7, 2012

This journey has not been at all like I expected.  I guess that is why I shouldn't be surprised by the latest news.  

We were excited about our 20 week ultrasound.  We would finally have a face and hopefully a name to put with this life growing inside me.  Reese and Bryan were both anticipating a girl.  I purposely chose not to dwell on it so that I wouldn't be disappointed either way.

Bryan kept saying it doesn't matter as long as it's healthy.  But, I know he really wants a baby girl.  It only took a few views on the ultrasound before she confirmed that we will be adding another boy to our family.  

We went into the exam room to meet with Dr Frederick expecting to hear that I needed to continue to work on gaining weight (I've lost a fair amount) and that he looked good.  That's what every family expects, right?  Unfortunately, that was not the case for us.  She did talk about my weight, but that was where the expected ended.  His heart looks healthy and is working properly, but is not positioned correctly.  On top of that, he has a thick fold on the back of the neck.  Not really understanding what this may mean I am listening intently.

She would like us to get a second opinion and a blood test before making any assumptions or decisions.  She referred us to a specialist and ordered her nurse to do lab work.  We are to expect the lab work to take a week (this was last Tuesday).  As with any lab work she has done, I expect a call from the nurse or a copy of the report mailed to me.  When I had a message from Dr Frederick personally just two days later, I knew our journey had just taken a turn.  I called her back and she immediately took my call.  After fifteen minutes of explanation and questions we found out that we are at high risk (1 in 50) for Down Syndrome.  She assured me that this is not a done deal.  It is still one in fifty.  The specialist will do a more in depth ultrasound and amniocentesis for more definitive answers.  

I've had a week now to think about this and all I know for sure is that God is in control and He will be beside us no matter what.  Living with and raising a special needs children has come up multiple times in the last week from unexpected places.  I don't know if this is a way of preparing me for what's to come or not.  I won't know anything else until we see the specialist next Friday.  Until then, I am going to enjoy the quality time that I have with my boys and ask God to give me peace.

Attack of the Reese

Due to technical difficulties I had to take an unexpected break from blogging.  (Technical difficulties= Reese attacked my computer with a sword and busted the screen.)

After a week and a half at home we are back at GHS.  We had a few rough days at home that seemed to be triggered by environmental factors.  It appears to me that he may be having allergic reactions.  With me being asthmatic it is likely that Brinkley is also.  At this point the doctors have referred to it as Reactive Airway Disease.  I will be pursuing this with our Pulmonologist.   Exposure to cats and smoke are two of the things that have set him off recently.  

Thursday we were admitted after the albuterol treatment did not bring his oxygen numbers back up.  We have been hanging out here working on weening him off the oxygen.  They have also been treating him for his feeding tube being infected.  This may be playing into him being slow to recover from the respiratory issue.  We were also able to get some info back about the sleep study he had last week.  He has severe sleep apnea and we will meet with the sleep specialist this coming Thursday to make a plan for treating this.  

Brinkley is making great progress in therapy despite having to miss so many sessions due to hospital stays.  This week we will start going twice a week to take advantage of the progress that he is making.  Keep in mind that he was six weeks premature, has Trisomy 21, and has had two open heart surgeries.  All of these bring some level of physical and developmental delays.  Even though he is a few days shy of nine months old, he is just starting to have good head control and is working hard on rolling over and sitting up.  He has started holding a small bottle on his own and he does well with handling toys.  We are so proud of him and can't wait to see how he progresses.  

Please pray for Reese as he is having a very hard time right now.  We will be seeing the behavioral specialist again tomorrow.  The last two weeks have been VERY VERY difficult with him.  We are praying that the doctor will be able to help us start moving in the right direction. 

Thank you for your continued prayers and support!