news {and waiting and trusting}

They say that “No news is good news.” Actually, King James I said something like, “No news is better than evil news.” I think the monarch had it right…especially when waiting for test results. But, during the wait, one can hope (for the briefest of moments) for bad news, just to have some answers. It is silly, I know.

“Many babies do not sit until they are 7 months old.”

I had been dreading Adelaide’s 6 month well-check appointment. She wasn’t independently sitting. I already knew Graham was sitting 3 days after he turned 6 months. I tried not to compare my babies, but I am a mom. I am a teacher. My brain operates in norms. Comparisons. I also received the email updates from various Mommy sites, which were eerily accurate with Graham…not so accurate with Adelaide. “She is probably just a little behind. She is easy-going and relaxed. Start practicing now; don’t compare her to Graham. Many babies do not sit until they are 7 months old. She will be sitting before I see you again!” I left our visit with renewed hope that my baby girl was just laid back. She would sit up when she was good and ready.

With each passing week, she didn’t sit. Days after she turned 7 months, she seemed to be losing the little bit of ground she had gained. At 8 months, I knew things were not going well. I prayed every day until her 9 month well-check. I didn’t want to go see our pediatrician. I was scared. Only family and a few close friends knew. I was embarrassed. I must have done something wrong.

“Adelaide doesn’t have any trunk strength.”

As soon as our nurse saw Adelaide, she gave me that look. We went through the motions of temperature and measurements, until I said, “She can’t sit up. She tries, but she just can’t do it.” That look again. She already knew what was coming. Our pediatrician came in. She did all the things she was supposed to do. She asked all the right questions. Then, I heard what I had been dreading. “Adelaide doesn’t have any trunk strength. She has low muscle tone. I will schedule the MRI. Do you want me to call Dave?”

“She is breathing on her own, but not yet awake.”

Adelaide did very well prepping for the MRI. I cried a lot less than I thought I would, but I wasn’t prepared to hear that they would put her completely under and use a breathing tube. Then, they walked away with our baby. We sat in that waiting room, well, waiting. When the nurse came out to say, “She is breathing on her own, but not yet awake.” I started shaking. It was then that I truly realized the alternative. When Adelaide awoke, she was ready to nurse. I was escorted back to a screaming baby. I had never heard that scream before. Adelaide had such a difficult time nursing with a gigantic IV in her arm. She did so well, they sent us home earlier than we had expected.

“They found something on the MRI.”

Later that day, we received the news. “They found something on the MRI. Posterior Fossa Cyst.” I dare you to Google it and not have a panic attack. We called our parents, texted our siblings, and started researching. The soonest we could get an appointment was 1-3 months away. Our doctor managed to get an appointment with a pediatric neurologist in St. Louis. Our wait would be only 8 days. We traveled a total of 15 hours in 2 days for an hour long appointment. Again, we were looking for news. Answers. Another piece to the puzzle. Adelaide’s balance and trunk strength were getting worse. Her eyes were getting worse. Her spit-up was getting worse. We just wanted someone to tell us what to do. How to fix it.

“Surgery isn’t an option. It won’t fix anything.”

Our visit with the neurologist in St. Louis didn’t go as planned. We assumed it was the first step before meeting with the neurosurgeon at Children’s Mercy. The nurse even told us over the phone to “pack as if she will have emergency surgery, just to be safe”…we took that, and all the research we had done, to mean that Adelaide would definitely have a surgery (soon) to open the cyst and/or install a shunt. Then, she would develop normally. We were taken aback when the neurologist told us the following:

  1. He thought the cyst was not the cause of Adelaide’s symptoms, but actually a symptom of something else.
  2. Surgery wasn’t an option, because he thought the cyst was not placing pressure on her brain stem.
  3. Opening the cyst wouldn’t change anything, because it is possible for people without delays to have a mega cisterna-magna.
  4. She probably has a genetic disorder, but there is only a 30% chance of even finding out what it is or how it came about.
  5. She shouldn’t start therapy until 15 months old.
  6. Her vision issues are not caused by the cyst, but the symptom of something else.
  7. Her social skills are completely age-appropriate at this time.

We were told that Adelaide needed several blood tests to check for hundreds of genetic abnormalities. We left with more questions than when we arrived. Will she be able to walk? Are her cognitive abilities impaired? If the neurologist is wrong, will her symptoms worsen as her brain grows and there is not enough room? Will she start having seizures? Is it degenerative? That last question is the scariest question. That word…degenerative…strikes fear in a mommy’s heart. I clung to Isaiah 41:10. “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”

“I have the results of Adelaide’s tests.”

Tuesday, October 22. This was the earliest we would get the results from Adelaide’s tests. With a chromosome micro-array, No News is Good News. For two weeks, we wanted to hear that Adelaide’s genes were normal. Nothing to report. I will not lie. During the wait, I hoped (for the briefest of moments) for bad news, just to have some answers. It is silly, I know. Monday, October 21, our doctor called. “I have the results of Adelaide’s tests.” “Wait, let me get some paper and a pen.” I was fully expecting some hyphenated name. I was expecting to hear congenital, hereditary, spontaneous. Instead, I heard, “No, you don’t need to write it down. It is NORMAL!” Our doctor was overjoyed. We ruled out hundreds of disorders. We ruled out congenital. But, most importantly, we ruled out degenerative.

“He will exult over you with loud singing.”

We still don’t know what caused the cyst. We still don’t know what is causing her hypotonia…we may never know. We still don’t know the answers to any of our other questions, but we know that Adelaide is not getting worse. That was enough for this mommy. It was more than enough. I literally danced through the house, praising God. I could feel Him singing with me, over me. “The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.” Zephaniah 3:17 has been in the forefront of my mind most of this year. It remains there as we continue on this journey.

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8 thoughts on “news {and waiting and trusting}

  1. Elise says:

    I’m so happy to hear this! Love you guys!

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  2. Meta says:

    so happy for you two. I know how you felt (sort of) beacuse I’m still in the dark looking for answers, but there are no questions being asked yet. I’m curious, was Adelaide’s slumping super obvious and that is why your ped ordered tests? I am beginning if I should demand testing or something for my little one to get some answers or see if we should expect worse or what. I just don’t know how far to push :(

    Like

    • lyndseballew says:

      Hi Meta,
      At Adelaide’s 6 month check-up, she wasn’t able to sit independently. Since she is so easy-going, we decided to give her some more time. Our pediatrician thought Adelaide would start sitting by 7 months. It didn’t happen. At her 9 month check-up, she was still not able to sit. Our ped ordered an MRI, because Adelaide also has eyes that constantly cross. At that point, we found the cyst. The genetic tests were ordered when the cyst was believed to be a symptom of something else. The genetic tests found nothing. We do not actually know what has caused Adelaide’s disabilities. We were told by the neurologist that therapy wasn’t really necessary until 15 months, but I did not want to wait that long. I would encourage you to speak to your ped. about your baby. Milestones are only markers of norms, but there comes a time when we realize that our babies just aren’t going to reach them on their own. Some babies do need more time, but sometimes time just isn’t enough. Praying wisdom for all of you!
      Lyndse

      Father God,
      We pray that you would give wisdom to Meta and her family. We know that You know everything about her child. You formed her baby in her womb. You are all-knowing. We pray that you would give her courage if it is necessary to speak up, wisdom to her doctors, and peace in all the waiting. We also ask that you would supernaturally heal her baby, if that is Your will. If not, we pray that you would give strength in the journey. We ask all of these things in your Son, Jesus’, precious name, Amen.

      Like

  3. […] and organizing every nook and cranny. My goals were completely abandoned when we learned that Adelaide had a cyst in her brain and may never walk. Then, medical bills started flooding in. Oh, and Graham regressed {for the umpteenth time} in the […]

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  4. […] reaching any of her physical milestones. I knew that 9 month appointment was going to kill me. When we got the news, one of my first thoughts was, “We will never be able to afford everything she will […]

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  5. […] One year ago today, we received the news of Adelaide’s chromosome array and other genetic tests. You can read about it here. […]

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