Friday, July 4, 2008

More testing


One year ago today, I did some double checking on dates on the calendar and realized that I may need to try and find that pregnancy test in the junk drawer under the bathroom sink. Much to my utter and complete surprise, a positive line came up. We were having a baby...a very unexpected baby, but one that we would love nonetheless. We were going to have a third child.

We had no idea what would lie before us over the next year. We had no idea that something could be wrong with the child we just found out I was carrying on that fourth of July. We had no idea that our lives would essentially be turned into a rollercoaster of emotions. We had no idea how much our spiritual life and relationship with our Heavenly Father would grow over the next year. We had no idea how much we would pray for that precious little person growing inside me. We had no idea what would lie before us over the next year as we hugged eachother holding onto that pregnancy test.

Nathan's second neurology appointment brought about the next stage of testing to determine the root of his peripheral hypotonia and abnormal breathing. Even though he has improved dramatically over the past few weeks, he is still lagging behind in the muscle tone area. Like the neurologist said, "Cognitively, he is great. His brain activity seems to be great, but his muscle tone and fine motor skills are bad." We are just still in the diagnostic process of trying to figure out why.

Poor little guy had to get more blood taken today (and due to a little error with the tubes, he will have to go back next week to get even more blood taken). They are testing his pyruvate and lactic acid levels, and his carnitine levels. They are also sending out some more genetic tests...a chromosome analysis and testing for a disease called mitochondrial myopathy.

At the end of this month (they are calling us with the correct date), our little man will undergo an MRI of his brain and spinal cord. The problem with doing it with kids this young is that he will have to have anesthesia for the procedure, so that makes his a mama a bit nervous. They are also going to check to see if his soft spot if closing prematurely since it has shrunk to the size of a pencil eraser already.

So, more tests. The genetic tests will take another 6-8 weeks to come back again, and I have no idea when we would get the results from the MRI back. Our neurologist is great...he is so friendly and is keeping us informed about everything. He talked with us for about 20 minutes today about energy-exchange problems in mitochondria (what Nate is being tested for), and hypotonia and different tests.

The hardest part right now is waiting...testing and waiting...and testing and waiting. The diagnostic process is long and difficult at times, and there are many moments when we question whether we should keep doing what we are doing or just give up for a little while and see how Nate does. All we can do is rely on God for wisdom and guidance, for He is the only one who knows what we need to do.

No, we didn't know what this year would be like as we found out about our newest addition joining our family, but we are thankful for this year. It has been a wonderful year! We have a son...a sweet son whose smile wins the hearts of many. Please continue to pray for our little man.

8 comments:

Chrissy Mae on July 4, 2008 at 12:52 AM said...

My little girl had an MRI about 3 weeks ago due to a seizure because of her meningitis.
I was also nervous about the anesthesia. It is always nerve wrecking when when you have to sedate little babies this young. I will say however, that the procedure went perfectly. They monitored her for about 3 hours after the MRI....made her wake up about 2 hours after it to try and eat...and then we got to go home. We got our test results by calling her Dr. the next morning. I will keep you guys in my prayers. I know how nervous and worried I was that day.... so I can't even imagine what you are going through right now. However....whatever God brings you to... he will bring you through!

Mom of TWO Princesses on July 4, 2008 at 9:42 AM said...

Praying for you all during the testing & waiting periods!

Kayla on July 4, 2008 at 10:04 AM said...

He does have a precious smile. Here is a little funny story for you. I read that first paragraph too fast until the last sentence. I read it to say that you were pregnant again now. Then I was so shocked that I thought you miscounted your own children when you said you were pregnant with your third child. I kept saying, "Oh my gosh"! Nathan kept saying, "What"? There was a little astonishment in the Jones house. Then I saw the error of my reading. Oops.

Merrie on July 4, 2008 at 10:56 AM said...

Continuing to pray...
And Happy Fourth with your darling three children!

gapeach on July 4, 2008 at 7:06 PM said...

Hi Amber,
I've been following your blog since Nathan's birth. What a beautiful family you have! God has blessed you bountifully. I've known you since you were born and I am an anesthesiologist. If there is anything I can do, please let me know.--Sandra

oh amanda on July 4, 2008 at 8:36 PM said...

Always praying for Nate!! I just believe we're going to hear good reports from all the tests! (((hugs)))

~sydney~ on July 5, 2008 at 1:10 AM said...

What a beautiful blog, Amber! We love you guys so much and continue to pray for Nathan daily!

Brandy on July 8, 2008 at 4:26 PM said...

I always check for updates on you all and always praying for Nathan.
I hope all the testing will come to an end soon and you will have your answers.

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