Well, It has been an eventful week - to say the least. In our last posting Natalie was beginning to run a fever but swift prayers took it away very quickly. Unfortunately, the next day she had one again. We had to make the decision on our own to go directly to Dominican, because it came on quick. We blew passed the warning temperature 100.3 and quickly shot up to the "go to the hospital" 101.3 degree mark.

We called Stanford right away and were not able to get in touch with any of the "on call" doctors. It's imperative to get a hold of a Stanford Dr. so that they're able to guide Dominican doctors in the exact treatment path. It was a very stressful for both Dana and I. I was constantly on the phone (an essential tool) with the after hours Stanford operator working every angle to connect Dominican with Stanford. It was a full hour at Dominican before we got things rolling. I don't know what was going on!

Time is so important since, when we made our first initial call within 15 min Natalie's temp shot up to 102 degrees (almost a full degree higher than ER emergency temperature levels). This means that if she had an infection, it was that much closer to causing severe (and perhaps irrevocable)damage to our little girl.

Since the securing of Natalie's medical treatments needs to be so specific, both Dana and I had to do everything in our power to really make sure the ER staff were doing everything correctly. Stanford has educated us well. The depth of our knowledge is pretty solid. However, the agony of waiting seemed to stretch on for eternity, as Natalie's fever kept climbing and any treatment hadn't begun yet.

Well in the end all worked out well and we were able to go home. It was only a few days later that we witnessed (what we think to be) Natalie experiencing a minor Seizure at the breakfast table. Her eyes crossed and she became limp. I was freaking out inside. This was seemingly caused by a reaction to some of the Spinal Chemo injections that are in full swing now. Praise God she had high platelet's levels which calmed nerves about any possibility of her brain bleeding and not being able to clot as a result.

I know it sounds weird but the truth is Natalie is outwardly doing great! We are keeping a very close eye on her as her counts begin to fall (which is expected). We are heading up to Stanford for a checkup today, just to dig a little deeper into the seizure event and cover our bases.

I was thinking to myself the other day and I really feel that since so many of you have become an active part in Natalie's lives, it's as if she has a whole bunch of parents. How powerful of a thought to know that we are all fighting this together. And together we stand with open arms, asking for Gods grace and mercy. We miss all of you. -- Dominick and Dana

7 comments:

Everyone at Early Start is thinking of you all too!

Just want you all to know that you are thought of & prayed for everyday. We miss you guys, too. Natalie is a real trooper! Bless her heart, Dana & Dom I just know God is holding your hands throughout these trials. You are an encouragement to us with your faith.
Much Love,
Scott, Leann & Tyler

The Lord couldn't have given Natalie better parents - You both are amazing. I know that she is in good hands.

The Lord couldn't have given Natalie better parents - You both are amazing. I know that she is in good hands.

Hi! You have probably read some of my past letters. Kathy and I are the parents of Jenni Smead. Jen is 35 years-old.After she was born, she progressed nicely up until she was approximately 6 months-old.
At this point we noticed an exaggerated moro reflex which is a NORMAL infant startle reflex you may see in babies. But they were happening WAY TOO MUCH, and there was a scary "ABSENCE look" within her eyes as she was "startling". After many, many, many pleadings that Jenni's pediatrician order an ECG, it finally happened. The doctor had insisted it was just that "normal moro reflex", but he was extremely surprised that the ECG results showed that there WERE deadly life-treatening seizures happening! The name of this rare seizure is "hypsarhythmia", now called "infantile spasms". Not many children come thru this condition. MY research showed that there WAS "no hope". We had MET Jesus thru Jenni's birth, so we put together a prayer chain with our Felton Baptist Church. About 8 months later, Jenni came out of the seizures. Kathy and I know EXACTLY what you are experiencing; tho our daughters differ in the specific health conditions,1) your picture of Natalie reminds us SO MUCH of Jenni's physical "Angel beautifulness"(Natalie looks SO much like Jenni did at that age!) 2) the fear, faith, and hope which envelopes you, fueling your apparent
3) BULLDOG TENACITY in MONITORING her care, 4)asking intelligent questions of the doctors, 5)researching, and researching, and researching, and researching! 6) asking others to pray for your little ANGEL!, and finally, 7) your CONSTANT vigilance OVER her! One day, some 8 months later, Jenni came out of her seizures, after she had almost become comatose. Kathy and I will pray for your little girl. I just wanted you to know that there is a neighbor in the county having had a similar experience with THEIR Down Syndrome Daughter!
Love in Christ,
John and Kathy Smead

We love you guys and thank God for the wisdom and love he has given you as parents.
Jim, Robin & Amalea Krill

Our prayers continue to hold you, your family and little Natalie up. We love you!
The Killes and Church on the Green

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