Sunday, July 31, 2011

Not Knowing.

I started internet searching again. I guess I'm searching for reported outcomes and from what I find it's usually a child that was diagnosed after birth and had a delayed outcome, or a preterm birth that had other issues along with CH due to being so early. I keep telling myself "Oh, well they found out late so they started therapy late" or "Oh, that baby was born at 24 weeks that's why there are so many issues"

Does this make me feel better? Yes. But maybe I'm being naive.

I read a newspaper article about a man in Boston whose grandson has CH and he does a lot of research to find answers. I don't know if he is the current mayor or was a mayor, but they found out when the child was 1 that he had CH and is having delays in speech and with walking.

There was a part in the article that caught my attention; it kinda made me angry "The condition can also be caused by oxygen deprivation, or by infections in utero."... Now, obviously, we can rule out oxygen deprivation...What did I do to my child? Was it something I ate, something I did, somewhere I went? Did I drink too much OJ? I don't understand. (Can you see where I'm going?)

Now I'm going to worry that this really was my fault and blame it on something I ate. I ate soft serve ice cream and they tell you that you shouldn't. Maybe it was the cosmo I drank 2 days before I found out? Or was it the coffee I drank until it was officially confirmed that I was pregnant? Or was it the "decaf" iced coffee Dunkin Donuts gave me that really wasn't decaffeinated? I wasn't sick at all during my pregnancy. I didn't have morning sickness, I haven't had a cold (I've been pregnant since February, I surprised I didn't have at least one cold yet).

Then I wonder if I was supposed to be having this baby. At my confirmation appointment, they drew blood to make sure my hCG was rising appropriately. I had to repeat the test because it was, but not as fast as they wanted it too. So I did another blood test and the results came back good. Then, at six weeks, I started to bleed and thought I was losing the baby. But again, they checked and said it was due to a hematoma and the baby was ok and measuring perfectly for the date that I was. We even saw a heartbeat that day.

Then of course we were told we were having a girl, twice. The first time they told us I was really pretty bummed as I thought up until that moment that we were having a boy. So the third time when they told us it was a boy and he had brain issues, I started to wonder if I'm being punished because I wanted a boy so bad...

I guess it is what it is and no amount of worrying, wondering or what if-ing will change things.


Thursday, July 28, 2011

Monday's appointment

We had an appointment Monday. It was basically to be "welcomed" to the practice and to make sure I'm measuring appropriately, which I am. Chase's HB was in the 160s.

I'm going for my gestational diabetes test tomorrow morning. Hopefully I will pass, since I haven't been the greatest eater. We're having an ultrasound on August 8th as well as another appointment. There is only 14 weeks left!

We're having a second MRI on 8/26. Maybe there will be some changes..but most likely not.

I might have mentioned this before, but sometimes I worry that we are being to optimistic. I get the "what if's" a lot. I had a dream the other night. It was weird. It was all audio and no visual anything. All I remember is someone telling me "He has no muscle tone." and that was it. I get so scared not knowing the future, so scared I get anxiety.


Sunday, July 24, 2011


Sorry I haven't written in a while. This week was the first week back to normal after 2 (finding out about Chase and then the power being out the next week).

I'll be going for my check up tomorrow (7/25) I will have 99 days left. 99 DAYS?!?!?!!! Where has the time gone? I have pictures 15 weeks apart wearing the same shirt:


24 weeks:

Woah...and I though I was showing at 9 weeks. BAHAHAHAHA!!! I was delusional. I'll have to put that shirt on again before my due date to see the difference in all three.

I had a lot I wanted to write about, but I lost the sticky note with all my thoughts written down. Yes, I had a list. My memory was bad before I was pregnant, it's defiantly shot to crap now.

My only goal this weekend was getting all the girl clothes I bought put into a space bag to be stored until/if/when I have a girl. I'm having a hard time doing it though, but I'm not sure why.

Well I have only today left until work tomorrow, so I should probably go about my day and get things done. Hopefully it will stop raining soon. Even though we need it, I still think rain is depressing.


Thursday, July 14, 2011

Back to normal

Our power is back on. I feel relieved. It's nice to have electricity. I don't know how people survived way back when when it wasn't it.

I stumbled on a website today. The woman who blogs on it has a 3 1/2 year old son who has CH. It was very informative, and it made me very excited to find it. It also renewed my hopes. I had noticed from her picture, I am actually part of her fan page on Facebook.

Her site address is:
I also have included it in my blog list.

Her Facebook fan page is:

It also got me thinking about having a fan page for Chase's blog. I'm still trying to figure out blogspot, so making a working fan page will probably be just as

Stay tuned.

Wednesday, July 13, 2011


I cried today.
I'm frustrated that when I google Cerebellar Hypoplasia it wants to talk to me about the findings in cats.
I'm frustrated that when I find stuff on Google about Cerebellar Hypoplasia, it's either uninformative, extremely vague, in large medical terms, or the worst case scenario.
I'm frustrated that I don't know what the future will be and not knowing means I can't plan accordingly.
I'm frustrated because we still don't have power.
And after 5 days of being strong, positive and optimistic, I cried.

Tuesday, July 12, 2011


"Don't it always seem to go, that you don't know what you got 'till it's gone?"

Who would have thought that electricity is so important?

I'm going on 36 hours and I'm about to pull my hair out. I feel like I haven't had power in days. Seriously. My cell service is shotty too, so making phone calls is a fun game to play. On the positive side, at least it's garbage night, so I can throw all my food in the fridge away tonight instead of having to wait a week if this had happened tomorrow afternoon. Word on the street is...we may not have power for 3-7 days...WHAT??? I hope ComEd plans on feeding me.

Well anyway, I digress. I wanted to write yesterday but couldn't because of the above and all, but Chase was really active yesterday. B even got to feel him for the first time which was so great to wake up to for both of us. It was was a nice change, from the week we had prior...then the power went out.

I've been feeling him a lot today too. Helps keep me positive about his future, even though I'm still so scared.

Here's hoping we get power back soon.


Saturday, July 9, 2011

The Special Mother

I read this and it brought tears to my eyes. I wanted to share it here.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

One day at a time

I kept myself busy today. I didn't want to Google and think about everything, so I went to Babies R Us and Target to redo my registries, met a friend for lunch, went to some craft stores searching for wicker baskets, which I could not find what I was wanting, ended up at Hobby Lobby and decided that I wanted to make a comforter for Chase. I got the pattern and I got the fabric, now I just need to work on it. I'm thinking about going back to get more of the fabric to make valances for the windows. Then I ran to Wal-mart to grab a space bag. I've decided to store the girl clothes I bought in that until one day (maybe) I will have a girl.

B felt the baby move this morning. He was so happy.

I'm trying so hard to stay optimistic about the future, and I feel that I'm doing a good job staying that way, I just worry that I'm being naive. We've found resources on Facebook and I found a forum on the bump that helps us learn more and keeps us from thinking the worst.

Friday, July 8, 2011


The DR called with the MRI results. They found a small abnormal cerebellum. It could be called either hypoplastic cerebellum or cerebellum dysgenesis. We still won't know what delays Chase will have until the future. We will have another MRI in 6 weeks to see if anything has changed.

I'm still in the collecting/learning phase of this new diagnosis, so I'm still unsure of what is out there and what outcomes to expect. But as I find things out. I will post them here.

I think the internet and I shall have some time apart tonight, and I will continue tomorrow with a clearer head.


7 Stages of Grief

The title says it all and in a matter of 3 days, I'm finally on the downhill of that roller coaster. I came across this website:, just so I could explain the emotions I've went through the past 3 days.

1. Shock and denial: I was shocked when they told us it was a boy. We spent the last 3 weeks planning and purchasing for a girl. I was in denial that they couldn't find a cerebellum for my child. I kept telling myself that there was no way this was true and I wouldn't have made it this far in with this issue.

2. Pain and guilt: When I realized how real this was, my heart ached. I couldn't really grasp the realness of what was going on and the pain of that was unbearable. Even thought the Doctor told us there was nothing we did wrong to cause a missing cerebellum, I ran over the last 6 months in my head, it had to be the seafood sub I ate, or the soft serve ice cream, or it must have been the cosmo i drank 2 days before I found out I was pregnant. I felt guilty in every aspect.

3. Anger and bargaining: I start to feel angry. I'm sure finding out the verdict of Casey Anthony did noting to help my situation. I was angry that my child was not ok and that she had just got away with murdering hers. "Why us?" is all I asked. "Why?" I never really bargained as I was angry and blaming God for this. Why would I want to bargain with Him when I already felt He hated me.

4. Depression, reflection and loneliness: I started to get depressed. This is so rare, no one can tell us what to expect. No one really knows anything and they won't be able to diagnose anything until about age 1. While B researched on line for hours to see what he could find. I buried myself into crafts to keep my mind from racing as fast as it already was.

5. The upward turn: It helped to talk about my feelings, especially since I'm one to keep them bottled up. B was a big factor in helping me talk through what I was going through and what we should do.

6. Reconstruction and working through: After what little information that is out there was brought forward to us, I'm finally not so emotional. I haven't cried yet today (knock on wood) so hopefully this is a step in the right direction.

7. Acceptance and hope: I've accepted that things will be challenging on the road ahead, especially since there is not much to go on out there. I hope that with the resources we have available, Chase will have a normal life, or at least as normal as we can give him.

Everything happens for a reason. We feel Chase was given to us for a purpose, what that is, I don't know yet but I'm ready to start this journey.


Thursday, July 7, 2011

The first post.

I'm so bad at blogs. I start them, and then never write on them so eventually they get the one where I wanted to do a weekly post about my pregnancy...ha! I posted once and that was it.

This blog... this will be different. This will be all about my son, and the rare disease he has called cerebellar agenesis. There is not much known about this disease as there are not many reported cases. In starting this blog hopefully I can share what I've learned with others as I learn them.

I guess I should tell about myself and my family. I'm married to a wonderful supportive man (B) and we share a home with our two dogs. We are anticipating the arrival of little Chase, now in more ways than you can imagine. As of today I am 23 weeks and 3 days pregnant. For three weeks we though Chase was a healthy baby girl that we would name Shelby...July 5th, that all changed with a roller coaster of information and emotion.

The following is what my husband and I recently posted to our Facebook to share our news with family and friends. Hopefully, this will explain some things a bit better, but again, this is all we know...

                          So where do I start? I guess we could start by telling you that halfway through our 3rd anatomy scan on Tuesday, we found out that Shelby will really be Chase since our baby is not a girl, it’s a boy.

But that’s the least of our problems. We also found out that Chase does not have a cerebellum, which is part of the brain, and for this to happen is extremely rare. This disorder is known as cerebellum agenesis. It is so rare in fact, that there is not much documentation about it so we won’t know what his outcome will be. We are now seeing a high risk obstetrician and have been in contact with a neonatologist. Reports that we, and the Doctors we have talked to over the past couple of days, have found, vary from person to person. There was only one case found so far that this was found before the baby was born, but the outcome is unknown. The other limited cases reported, it was found later in the person’s life and varies from small minor delays, to sever major delays. Information is very conflicting on what we find online as some of what is reported is not what our Doctors feel is necessarily true in our case and they don’t agree with what is written.

Since finding out Tuesday, we’ve had another ultrasound (this is the 7th ultrasound during this pregnancy) and a fetal MRI, which will be read by a leading expert in this field. We also had an amniocentesis done, which is a test for chromosomal abnormalities. The preliminary came back normal.

We will update more about Chase as we find out, but again, please keep in mind that this disorder is so rare that what you may find while researching may not be the exact case. Even the Doctors we talked to were quite surprised by what they found, as they anticipated a much worse outcome, due to other diseases with similar characteristics.

B has made contact with two people, a woman whose son has this and a man who has this, to hopefully share their experiences with us.

We want to apologize for not talking to anyone over the last few days, as you can see, it has been a roller coaster of information and emotion. Feel free to write to us, but please don’t be offended if our answers are delayed.

We want to thank you for thinking of us and all of your support you have given us so far. Please keep little Chase in your thoughts...
My goals in starting this blog are to find others with this disease and to hopefully be a resource to others through my experiences.