Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast. I will cry unto God most high; unto God that performeth all things for me. He shall send from heaven, and save me from the reproach of him that would swallow me up. God shall send forth his mercy and his truth. - Psalm 57:1-3


I am a stubborn red headed woman and I don't like asking for help. My tiredness and bad moods are the result of this. My daughters have had a stomach virus the last few days, some of which was over the weekend. Our weekend night nurse has been extremely ill, and because for so long I have trusted close to no one to watch miss Makayla, I have had very little sleep. So when I prayed for my little amount of sleep to be sufficiant, I was surprised that I had a phone call from the woman who approves the amount of hours in nursing care we are allowed to use. She gave us a total of 96 hours a week which is up by about 20 hours from what we previously had. Was this Gods answer to my prayers? Was he saying, hey stubborn girl, appriciate the help that I am giving you? I haven't thanked him for that yet, if we are being honest, I don't thank him nearly as often as I should. He is so merciful, he helps us so much with Makayla.

I received a call today from Cinncinati Childrens Hospital. We are waiting on two departments and then we will have the appointments scheduled for Makayla's new team! This should be done by tomorrow morning! I am sad to say that we will have a new ENT for a while. We really like him a lot. He and God are the only reasons for Makayla still being with us. Makayla's airway is extremely difficult. I guess I didn't realize just how difficult until we went into Makayla's 9 month appointment today. So I will try to explain it to you as it was explained to me.... Yes the ENT brought Makayla back, he is amazing, but when he was trying to secure Makayla's airway, he went in through the top tracheal ring, which is cartilage.  Cartilage doesn't heal. When people have a knee injury, it doesn't go away, there aren't enough blood vessels for accurate healing.  I was still holding onto the hope that we would be able to possibly do a dilation instead of a tracheal reconstruction. My hopes were pretty much shattered today when I was told that it wasn't possible with a cartilage damage. So although her ENT has done these before, Makayla would be the most difficult one he has ever done. And he is affraid that is something goes wrong, he wouldn't have anyone else here to help. I am still hoping that he will come to Cinncinati to help with the surgery though. It would be nice to have someone extremely confident in Mid Missouri doing tracheal reconstructions!!!  So for Cincinnati our team will consist of; ENT, Cardiology, Audiology (for balance), Plastics (cranial facial). These are all surgical needs. If the extra fluid on her brain becomes a problem, we will add, neuro surgery to the list. I am very happy about this! I see it as a new begining and a chance to have a "normal" life with Makayla. I want to give her a real bath some day (she loves water)!!!!!!

Our issues with Cinncinati, Makayla and I will be making most trips on our own. YIKES! I have to pull over, when driving,  about every 5 minutes to suction her now as it is. Can you imagine how long it will take us to make a 7 hour trip?

Thank you for all your prayers, support and those who bought T-Shirts, if you could post a picture of you wearing them, that would be great!!!

Today as a gift

Here it is again, the Great reversal: many of the first ending up last, and the last first.
-Matthew 20:16

Makayla was diagnosed with CHARGE syndrome in August of 2013.  From the day she was born we knew something was wrong, we spent 5 days in the hospital doing many tests.  Not many people know very much about CHARGE, research is happening but slowly and new symptoms seem to pop up daily.

CHARGE  is an acronym which stands for:
C-  coloboma
H-  heart defect
A-  atresia choanae (also known as choanal atresia)
R-  retarded growth and development
G-  genital abnormality
E-   ear abnormality

Makayla's specific sypmtoms are; Heart defect (Coartation of the Aorta), atresia choanae (blockage in one side of her nose), ear abnormality (cup shaped, rotated, lowered, moderate to severe hearing loss in both ears) swallowing difficulties and airway issues.  She has other sypmtoms which don't coincide with CHARGE such as a small jaw and extra fluid on her brain.  Children with a diagnosis of CHARGE syndrome have a 70% survival rate to the age of 5 years. The percentage decreases significantly with heart defects and airway anomalies.

Which brings me to the point of my post. We see on the news frequently about children, without life threatening diagnosis, that pass away due to parents, babysitters or siblings taking the childs life for granted. Children that could otherwise live a long, healthy, beautiful life.  Before I had the honor of having the opportunity to be Makayla's mother, I never thought a day would come that I would need to excersise the saying, live everyday to the fullest, you never know when it will be your last.

My daughter has to fight to live and breathe every single day.  Even with everything she goes through, there is hardly ever a time that she isn't smiling. She is so happy all the time, to the point that her brother and sister beg to be around her, touching her, holding her, wanting to help with her cares.  My children, all three of them, have already, perhaps before their time, learned how to embrace my favorite of sayings, "Today is a gift, that's why they call it a present." I don't know how many more "gifts" or days I will get with my children, but I vow to take advantage of each and every second of them. I challenge you all to do the same.

Think of it this way, if your child or spouse or special someone were to be gone tomorrow, what would you be upset about the most? Not enough pictures, memories, smiles, kisses, hugs, candy dinners, tents made with the kitchen table, movie nights, staying up late, reading books to them.  The list is endless, don't go to bed tonight with regrets.

MAKE EACH DAY COUNT! - Leonardo Dicaprio (Titanic)