This Little Miggy Stayed Home: Special Needs Spotlight || Apollo

Friday, October 18, 2013

Special Needs Spotlight || Apollo

My name is Renee. I am 37 years old and married to my best friend, Chuck.  We have fourteen children. Five adopted (through foster care, private adoption and from Liberia, West Africa).  I gave birth to the first eight babies in nine years! Then came our grand finale, Apollo XIV, in June 2010. Our three oldest children (adopted as teens from Liberia) have all moved out. 

Apollo was born by emergency c-section after his cord prolapsed at home. He was declared "perfect" at the hospital. He had difficulty nursing, was very fussy and slept very little. By three months old he developed stridor (noisey breathing) and a cough. He was sick with cold after cold. At 11 months Apollo was hospitalized with RSV and pneumonia the doctors said he was "much sicker than most RSV babies". Apollo was diagnosed with a double aortic arch at 18 months. In 2012 he had two heart surgeries, one at Seattle Children's Hospital and one at Texas Children's Hospital. He also had a g-tube placed due to compression of his esophagus. His stridor is now gone and the compression of his esophogus has been removed. Apollo is still learning to eat and uses the g-tube 2-3 times per day to get adequate calories. You can read more about our family and Apollo on my blog A Bakers Dozen and Apollo XIV.


Miggy:  Hi Renee!  Thank you so much for talking to us about your son Apollo today.  Now I know that Apollo was born seemingly healthy, but things began to decline during his first year.  Do you remember when you knew something was really wrong?  At what point did you finally get a diagnosis and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Renee:  Apollo's birth was quite traumatic when his cord prolapsed at home. We were transported by ambulance and my husband literally held his cord in DURING the C-section. After a birth like that you can imagine how relieved we were when he was declared "perfect" at birth.  At 3 months Apollo developed loud, raspy breathing that I thought was his first cold.  He gained no weight from the time he was four months old until he was over 7 months old. That was when I realized something was wrong.  He was literally shrinking before our eyes. 

It took over a year of going from doctor to doctor to finally get him diagnosed. After a choking incident so bad that he passed out and I had to call 911 my husband and I demanded either a referral to a cardiologist or an MRI. He  was diagnosed with a double aortic arch by MRI at the age 18 months. Mainly we felt relief. We knew something was very  wrong for a long time but kept getting the brush off from doctors.

Miggy:  Explain how your Apollo’s specific special need affects your day-to-day life?  

Renee:  Apollo has had two surgeries to repair his double aortic arch. Today our main issues are with eating.  He is tube fed three times a day because he is still unable to eat enough to maintain his weight.

Miggy:  What are the biggest worries you face for Apollo?    

Renee:  Our biggest worries revolve around his respiratory system.  Apollo's trachea is damage from his double aortic arch.  It is "c" shaped in one area instead of being round so this significantly narrows his airway. There is no way to tell as he gets older how he will do with his breathing. His airway will never be the proper shape.  Some kids do very well as they grow and have no lasting respiratory symptoms.  Others deal with respiratory issues their entire lives. 

Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Renee:  Oh, we have plenty of these! Here is a recent conversation between Apollo and my 13 year old son Enoch: 

While driving in the van,  getting ready to feed Apollo…
Apollo: No, no, don’t pull on my tube!
Enoch: I’m not going to…I’m just going to reach into your pants and get it out.
Let's just say strangers don't understand these conversations...

Miggy:  How can people best approach or respond to Apollo? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Renee:  I love it when people just come right out and ask questions directly rather than stare or keep looking surreptitiously. 

Miggy: I  know from firsthand experience what a special role siblings can play in your special needs journey.... and Apollo has quite a lot of them!  Is there anything you’d like to share about your other children and their relationship to Apollo? 

Renee:  My other kids have been such a blessing to Apollo and my husband and I.  My teens all know how to tube feed Apollo, and recently our ten year old learned how to do it. This often relieves me of the burden of doing *every* feeding.  Apollo's brothers and sisters are also his biggest cheerleaders!   

Miggy:  You're certainly not a novice when it comes to mothering, but I'm sure there are lessons you've learned that are unique to Apollo's and his condition.  What is the biggest lesson you’ve learned since becoming Apollo's mom?   

Renee:  The biggest lesson I have learned is really just how wearing it is to take care of a medically intense child.  We are a committed homeschooling family, but last year had to enroll our youngest five in public school so I could take Apollo to his many appointments, including taking him to another state for surgery.  I have also learned how much a family call pull together through the difficult times.


Oh my gosh Renee, I was dying over your funny moments answer... hilarious!  It's so good to find humor in our unusual circumstances.  Thank you so much for participating and sharing your beautiful family with us.  And how could I not lead with that first photo?  Apollo has captured my heart!  (The pictures are all Renee's as she also has a photography business!)  I also find your honesty so helpful.  Yes it can be wearing when you have a medically intense child and sometimes even a families biggest commitments--in your case homeschooling--must undergo major readjustments.  That must have been a difficult decision.   I'm sure it will help other families in similar situations to see that sometimes you just can't do it all, and that they're not alone.  Thanks again Renee!  God bless you and your sweet brood.  

As always if you or anyone you know would like to participate in the special needs spotlight email me, or have them email me directly, at thislittlemiggy at gmail dot com.  

Have a great weekend!  

ps--Don't forget to enter my Freshly Picked Mocc giveaway!  Contest open until Sunday evening, winner announced Monday!

1 comment:

  1. Absolutely inspiring in every way. Reading about such a strong family and brave kid like Apollo make me feel like the world is a good, good place.