7 months & neuro appt

I hope you all had a wonderful Christmas. Ian is now 7 months old, and he is doing something new each day. He continues to grow and develop normally. We may have had our last appointment with his pediatric neurologist today. He is extremely pleased with Ian's development. He marveled at how his posteria fossa isn't even enlarged. He believes we are way past the danger zone for hydrocephalus at least for now. He has met 60 year olds presenting hydrocephalus, but they can usually be treated relatively easily. Dr. Painter feels that if he brought us back anymore, it'd be just to say hello and that there's no reason to keep seeing neurology unless he starts vomitting without other reason, his vision becomes blurry or if he complains of headaches. When I think of the prognosis we were given by genetics doctors....well, I'm just not going to think about it. We are where we are, and I'll take it.

5 months old

Wow, has it really been since August since I have posted? I'm so sorry about that! Life has been crazy busy, and I'm so thankful for it all. I'm thankful that Ian's good health permits me to work and allows our family to book our weekends with fun fall activities and time with family and friends. Ian is amazing in every way. His smile is contagious (as are all babies' smiles) and his giggle brings tears to my eyes quite often. He is happy and healthy. His development seems to be on track. He hasn't rolled from back to belly yet, but his physical therapist isn't too concerned and our doctor thinks it may be because he is such a big guy. He is almost 18 pounds and 27 inches! He is very close to rolling and does it with ease with a little help! He has been introduced to his bouncer and he loves it! He seems in complete control of himself while he bounces. Day by day and prayer by prayer.....thanks for reading and mostly, praying.

Well, first of all and most importantly, Ian is doing beautifully! I could hold him and play with him for hours. I tear up when I look at him. The doctor's words "I don't know why bad things happen to good people," came to my mind this morning. I know he didn't mean Ian but Ian's DW, but I can't help but cry when I think of that horrible time. He is absolutely the best thing that has ever happened to me. I have learned so much from him already.

Ally, Ian, and I met my neighbor and her grandkids in the city yesterday to visit the history museum. It was a good time and I was proud of myself for venturing there on my own with the kiddos! Pathetic, I know! Anyway on our way out of the city, I noticed a sign for a school for blind children. I guess I just made a mental note of that. Also, I believe in an earlier post I had mentioned that I thought Ian was favoring turning his head to the right. Keep these in mind as you continue reading. It's the irony of my life. Pretty much what makes me crazy.

I had a bit of an emotional setback yesterday. Through early intervention, I have joined a group called Parent to Parent in which parents are matched according to children's conditions to receive and provide support for one another. A very nice mom called me yesterday to offer support. She has a little boy who is 7 years old with DW. She was so sweet to share her son's world with me. She knew a lot about DW and especially vision. Her son is visually impaired. He has a condition in which he sees, but his brain can't process the images. He also has very small optic nerves. They used to live on the other side of the state, but they moved here for their son to attend the school for blind children here on our side of the state. What are the chances that the day I notice this school, I learn of a child with DW who attends there? I asked her how they noticed that his vision was affected. She told me his grandmother noticed that he only looked to the right. She found a neuro opthamologist who could read her sons MRI, and the condition was identified. She was a teacher and decided to go back to school for vision support therapy, and she now works for Early Intervention. I told her that I used to think that Ian preferred his right side but that now he does look to both sides. She asked if he was making eye contact with me, etc. He is, so that's good. Her son is also nonverbal,suffers seizures, and isn't walking independently yet, but he's close! Please pray for T. He sounds like an amazing little guy that has had to face more challenges in his 7 years than many of us will face in our lifetimes. Because she is local, I asked her if she knew of our pediatric neurologist. She said many of her patients see him. I didn't get a good vibe at all. She said he is brutally honest, and that it sounds like we have had the most positive experience with him. :-( I do still love him, and his experience and knowledge of the brain can't be doubted, so I'm still thanking God for him. It is easy to love someone who tells you good things though! I explained the condition of Ian's brain to her and she was encouraging. I asked how vision impairments are tied to DW and she explained that it takes 40% of the brain to process a visual image so anytime the brain is compromised, vision issues can happen. I guess it's the same with hearing.

I have to admit I have been living on a high cloud since Ian was born, and maybe all of this into bring me back down and prepare me once again for the unknown. I have met so many strong and faith filled parents and amazing kids. Life is fragile and precious. Thanks for listening.

Early Intervention & Neurology Appointment

Early Intervention folks were here on Monday to evaluate Ian. He was too cute during the evaluation. Megan asked how he likes tummy time; he loves it! He was holding his head up and turning it from side to side and eventually rolled over! He qualifies for service no matter what because of his diagnosis, but they of course needed to acquire scores. He is grasping things like my hair and he tries to swat at toys (with a lot of effort!). He will also hold things when placed in his hand and put them to his mouth, but he wouldn't do this while they were here, so he didn't get any points for fine motor skills. It isn't a concern though. He tracks beautifully with his eyes and he definitely hears sounds. He seems to favor turning his head to the right, so we are just going to monitor his hearing. We are going to get a full audiology screening done soon. He is starting to smile socially and babble a little. He pushes up with his arms and bears weight on his legs. I couldn't be happier at this point. We are starting with physical therapy and specialized therapy each every other week though just to monitor his development.

We saw a different pediatric neurologist on Tuesday. She reviewed his MRI images and wanted us to understand that Ian has Dandy Walker Malformation, not Dandy Walker Variant. She said it's all very technical and showed us what makes it DWM, but honestly I'm still so confused. She also mentioned that he has very little vermis development but that the rest of his brain looks completely normal. UGH a little. I did get sick to my stomach and fought off tears, but I kept reminding myself that he is doing great. She wasn't doom and gloom and she kind of seemed confused as to why we were even there since he is doing so well. In her opinion, he will never need surgical intervention (a shunt). She said they can tell by the anatomy who will be "troublemakers" and who won't. But then she also showed me where exactly to watch for bulging in his head. She agrees that it will be a day by day thing as far as development goes, but she advised us not to worry too much. She considers it a moderate Dandy Walker Malformation, and many of people with a moderate DWM do quite well.

Ian has an appointment with Dr. Painter on September 21. That will be a little late for his 3rd month check-up, but we should be good.

Ian is currently in the 95 percentile for length, 90 percentile for weight and 50 percentile for head circumference. AWESOME!

I have heard that Ian is being removed from some church prayer lists. That's fine, but our little guy is going to need special prayers for a long long time. Thank you to all of you for thinking of him. And, if you don't mind, pray, pray, pray!

Update

I promise to update by the end of the week. Nothing really new, but I guess some changes in terminology and another doc's opinion. I'm off to bed, but I didn't want anyone worried that we were at the hospital or something. Thank you God for our Ian.

Finally!

Sorry it's been a long time since our last update. Ian is doing well, or at least I think he is! We have been having trouble getting his second neurology appointment scheduled due to Dr. P's very limited schedule. I have been calling and trying to get an appointment scheduled for over 3 weeks; it's been very frustrating. Finally, someone called today to schedule him to see a different pediatric neurologist on August 2, at 4:40. Of course that's my first day back to work. I have inservice that day and will be at a conference, but we finish at 3:00, so I should be able to make it to the appointment with them. I also contacted Early Intervention just as a precaution; it can't hurt, that's for sure. Marilynn is coming on Friday to start the process, but she said that Ian qualifies no matter what because of his diagnosis. She also told me that she was recently contacted by another family in our county with an infant with DWS. She said she would get us connected. She believes that the other baby has some other syndromes along with Dandy Walker. It is very rare to have Dandy Walker alone it seems. There is so much to learn about this syndrome. We celebrated Ian's christening this past weekend. You can imagine what was going through my mind as I watched my beautiful baby boy get baptized. Ally continues to be a great big sister. The other day she noticed that he looked bigger in his car seat and she said, "Mommy! Baby brother is bigger now! Now can he play with me?" They both melt my heart. We have seen lots of smiles from Ian, but I don't think they are real smiles just yet! I'll let you know how it goes with EI. Until then!

Praising God!

Ian's appointment went very well yesterday. Dr. P is extremely pleased with everything so far. His head circumference is measuring just as it should for his age. This along with the head ultrasound showed that hydrocephalus hasn't set it. It could happen at any point in life, but Dr. P said that in all likelihood if it is going to happen, the first three months are the most critical time period. He wants to see us back in a month. Scheduling that is going to be fun. Joe and I both feel that we won't see Dr. P many more times before he fully retires, and as sad as I will be about that, I know that God sent him to us just when we needed him. I still tear up and if I let myself I'd sob thinking back to those dark days in January. Dr. P was my sunshine. Ian will be one month tomorrow. He is so sweet. He loves belly time and raises his head super high and can even turn it from side to side with work! I could go on and on about him. Still living life one day at a time and loving every minute with him! Thank you God for my special gift, and thank you friends for all the prayers.

Appointment rescheduled

Ian's neurology appointment has been rescheduled for June 22. I hope everything is okay inside of that tiny head of his. Probably won't be much to say until then. I actually hope there isn't! Prayers and hope till then.

Appointment coming up

Due to scheduling conflicts, we head to Children's this week for Ian's first head ultrasound and neuro consult. I am a little frustrated because I was happy with the appointment set for the end of the month. I feel it's too soon from his MRI, but we'll see how it goes. I have been told that Dr. P is one of the best pediatric neurologists in the country; I believe it, too. But, he's semiretired, so appointments could get tricky. We have been so blessed that he was available to see us during our pregnancy. As I have said before, I thank God for him. Ian is doing well. I stare into his eyes and sing to him and talk to him all day long. I do wonder if he sees me and hears me, but there's no reason to think he isn't. He's super sweet, and I am partial, but I must say he's a cutie! I am enjoying our days and falling more and more in love! I have pushed myself physically and will be spending a few days in bed. Prayers that his head ultrasound looks great and we aren't facing fluid build up. Thanks!

Welcome, Ian!

Ian Joseph Grodz arrived on May 24, 2011, at 9:25 am. He weighed 8 lbs 15 oz and measured 21 1/4 inches long. Needless to say, Joe and I are in love with him. He is so adorable and sweet. He has a full head of light brown spiky hair with blonde tips just like his big sister! His APGAR scores were 9 and 9; we couldn't be happier with that. The NICU docs did take him pretty much right away to await his fetal MRI. My doctor and the pediatric neurologist were a little ticked at this. They felt he could easily wait with me until his procedure, but all worked out in the end. Joe spent most of the day with him in the NICU. I missed them both terribly, but my sister, Linda, and my sister-in-law, Kelly, stayed with me. We just received the preliminary MRI results. His ventricles are normal sized; no need for a shunt at this time. YAY! Dr. P (his pediatric neurologist) called to talk with us, and he is thrilled with what he is seeing. He has the variant, so when you are researching Dandy-Walker you'll run across malformation and variant. It's all very confusing. Anyway, he is happy with what he is seeing, so I am going to be happy, too! Dr. P will be here tomorrow to go over the full results with us, but as of now, he'll be monitored every two months. That's about it for now. We thank you all for praying. Prayer is so powerful. I know your thoughts and prayers are why he is doing so well and the only reason I have made it through these last 4 months. Please continue to pray for our Ian. We are so blessed.

2 Weeks To Go!

It's hard to believe that 2 weeks from today (hopefully at this time) I'll be holding my baby boy. Pray that this is possible, please. I am so excited to meet him..to look into his eyes and whisper in his ear that I will always protect and take care of him. We'll be amazing together. He'll see me. He'll hear me. And, I know he'll hold my hand and walk along side of me someday. I just know he will.

Thank you to all of you that are praying for us.

Counting down!

In exactly four weeks Baby Boy Grodz will be here and maybe some of our wonders and worries will be answered. I am getting anxious to meet him! He continues to be an active baby. He doesn't let me forget for one second that he is busy growing bigger and stronger. I have entered that uncomfortable stage of pregnancy. It is hard to sleep, heartburn is a killer, and I am quite swollen. I am actually sitting with my feet up now while Joe gives Ally her bath. It is hard for me to sit still; I keep thinking of the many things I hoped to accomplish before our new addition. Joe says what gets done will get done when it gets done. Perhaps he's tired of the nagging! I go for my weekly appointment on Thursday which feels like a giant waste of time. We have seen so many doctors! Oh well, anything could come up I'm sure. That's about it. As we get closer, my fear of the unknown gets stronger, but I know deep down, we'll be fine. Change is never easy, so I am sure I am scared of "rocking the boat" as well. I just hope our future isn't hospital stay after hospital stay keeping us away from Ally. I pray that he is healthy and happy, and I ask you to pray for that, too. Thank you!

Big Boy!

We had another ultrasound appointment today. Baby boy is growing. He's in the 78th percentile for weight which the doctor of fetal maternal medicine was very happy with. As soon as the technician started the scan she said, "Wow...look at all the hair on that baby!" I had no idea what she was looking at, but she pointed out the spiky shadows. Cute. He is also quite bored with us. We witnessed the biggest baby yawn ever! We couldn't get 3D shots though cause he was covering his face with his hands and when I rolled to make him roll, he smushed himself up against me. Guess he's tired of us messing with him! There were no surprises in the visit. DWM still present, but not worse. Everything else "looks" normal. The doctor said at this point, "It is what it is." and there is no need for another ultrasound until delivery day. Yay, I guess? Now it's just a wait and see..oh yeah, and PRAY.

Nothing new. Just thankful.

Well, I'm pretty huge and working is getting exhausting! But, I am thankful for work. It keeps my mind busy, and I am surrounded by very supportive people. And, I am so so thankful for Ally. She cracks me up and makes me feel like there couldn't be a thing wrong in the world. We were sitting on the couch this evening and she looked over at my belly and rubbed it and said, "I love you baby brother!" Joe and I were both there to hear it. It was the first time she said anything like that without being questioned first. Our family is perfect. Just perfect! I am so thankful for all the prayers being said for us. When I say it is what is getting us through, I honestly mean it.

Baby boy is so very very active. Can he be too active? His Aunt Chele got to feel and see him in action this weekend. I think she was a little freaked out with seeing a limb of some sort poke out and roll across my belly! Back in January, I asked the doctors how he could be active in the womb if he were going to be in a vegetative state when he was born.  They explained it as primitive movement. This can't just be primitive movement!

I am going to ask for more prayers. We travel to the hospital again on Thursday to see how our little man is doing. I'll let you know.

32 Weeks

Baby boy and I went for a belly check today. Our scheduled c-section has been moved to May 24th. That's probably better than Friday the 20th because he'll need to see specialists and have tests performed, and they are only in on weekends for emergencies.

I stopped to talk with our family doctor's office (Ally's pediatrician) about baby boy. The receptionist started to cry; she's a mom. Anyway, at this point we don't see any reason why he can't go there for regular pediatric care. He'll be monitored by specialists regardless. I guess it's a wait and see kind of thing.

I am starting to swell and get a little uncomfortable, but I am still loving being pregnant!

Ultrasound in 2 weeks!

March 17th Ultrasound

I saw my regular OB the morning of the 17th, and everything looked good as far as the belly check and heartbeat check went. She told us that she has/had a patient that had Dandy-Walker, and that she is fine and had a healthy pregnancy. Interesting.

We had to wait about a half an hour for our ultrasound with genetics. I was okay waiting this time.

We had another amazing tech. She was super sweet. I told her that at our last visit it was mentioned that we may be able have a 3D ultrasound performed. She promised she would try if he was cooperating.

The ventricles in his brain continued to measure as "normal" other than the one in the fourth ventricle, but it is only a couple of mm larger than it should be. No huge cause for concern at this point. He looked amazing. I have to admit with each ultrasound, I stare hopefully at the screen wishing the malformation would disappear. A mother can dream. Baby boy cooperated. Our tech switched over to 3D and 4D. I watched him open his mouth, lift one side of his lip, and smile! He is so sweet.

A new doctor of genetics came in to meet with us. He was very nice and wanted to sit with us and learn all about what we know and add what he could, etc. Nothing new was discovered. He did float up above the cyst to show us what they think might be some vermis. WHO KNOWS. He was surprised that we hadn't been sent for an echocardiogram, so he had our genetic counselor arrange a scan for us. Thankfully we were able to get in the same day. We have had to miss quite a bit of work because of all our appointments, but that's just how it is. The scan of his heart was normal. Thank you God.

Before the echo, we did meet with a neonatologist to discuss what would happen right after birth. I can't say that we enjoyed that meeting. She was the black cloud of the day. For some reason she felt the need to remind us that what he has isn't normal and that we have no idea how he will do mentally or physically. She said, "I can't tell you what kind of Kindergartener he will be." Well, I didn't ask her any of those questions. I know we are facing the unknown and that's the most terrifying part of it all, so thanks lady. One thing that she did say that was kind of like an, "Oh," moment was that just because the rest of the brain, body, etc. is developed and present, it doesn't mean that it will function correctly. I hadn't really thought about that. I was always encouraged that everything else appeared to be "normal" so I just thought it would "work" too. Add more worries to my list. Anyway, she said that directly after birth, he'll be taken to the NICU for a full evaluation. Worst case scenario, he'll be transported to the children's hospital for surgical intervention. Best case scenario, he'll be able to return to me and wait for his MRI or head ultrasound. She said it all depends on whether he knows he has this. Interesting. Please God, let my baby stay with me.

So four appointments later, we were able to head home to pick up Ally. She was so excited to see the awesome pics of her baby brother.

Next ultrasound/genetics appointment is April 14th. Prayers and hope until then.

Totally In Love

I promised myself that I wouldn't worry during the next four weeks. Our next appointment was scheduled for March 17. As you can bet, I worried, but I also fell madly in love. I am so in love with my son. I am scared and nervous and I worry for him and about him, but all this worry comes from my love for him. I know he will be great and do great things! My sister told me something that hit home many weeks before this. She said, "He is your baby, not to fear, but to love." I sat down (this was said to me during a text message conversation) and sobbed. No one could have said it better. Something about those words changed me. I don't fear him-never did; I fear the unknown, but I do love him-with every part of me.

February 17th Ultrasound

We didn't have to wait long in the waiting area to be called back for our ultrasound. I was grateful for this. I am very happy for other pregnant women, and I smile when I see babies, but I want/wanted to feel like they feel. I just wanted the happiness that usually accompanies pregnancy. The fear of the unknown creeps in constantly.

Our tech was very sweet and upbeat. Her attitude really relaxed me. I was so anxious to see him! He was very active once again, but she was able to get readings of everything that she needed to. Good news; the ventricles in his brain were normal sized except for the 4th ventricle which has the cyst, but this ventricle was only 1 mm larger than "normal." I think I smiled the entire time!

Dr. C. (the doctor of fetal maternal medicine from our first appointment) entered the room to go over the scans with us. He was all smiles; and to be honest, we were happy to see him too. He is a very likeable doctor. He gave me the worst news a mother could possibly get, but I still like him. I didn't take only his word...I sought out answers. I didn't give up on my guy, and I wouldn't let Dr. C. do so either. He informed us that he spoke with Dr. P. (pediatric neurologist) and that "people seem to be changing their tune a little bit and perhaps it will be more mild that we originally thought." Okay, doc. He decided to scan his brain again, and while doing so he mentioned a vermis. Joe and I looked at each other - a VERMIS? We were told there is no vermis. He explained that now they feel there may be a sliver under the cyst, and that the MRI report indicates that it is present withrotation and that the inferior portion of it is missing. Who knows. Well, God knows, that's about it I think! I don't think we'll have a clear picture of what is present and what is missing until he gets his own MRI after birth. Regardless, no new abnormalities were discovered during this visit, and he seems to be growing well! I'll take it!

What is Dandy-Walker?

I'm sorry that I didn't formally educate you on what DW is. Here's an explanation from dandy-walker.org:

Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present. The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area between the two cerebral hemispheres,) and malformations of the heart, face, limbs, fingers and toes.

Amnio Results

About a week later, our genetic counselor called to give us the good news that the full amnio results were back and everything was "normal." Another sigh. We were scheduled for an ultrasound to check out our little guy on February 17, 2011.

As this date approached, I was excited and so very nervous. One of my new worries was hydrocephalus setting in. It seems that the longer fluid is pressing on the brain, the more brain damage occurs. I felt him moving and we were both growing. I just wondered what was happening in that tiny brain of his.

Each day brought worries, but I was enjoying my pregnancy again. It is all so amazing. I was seeing signs everywhere. Passing a church one day, I read what they had posted on their sign: "Worry does not take away tomorrow's sorrows. It only takes away today's strength." My new motto (well, most of the time!)

I continued to reach out to people: family, friends, strangers, people of faith, etc. I found comfort from each of them.

Fetal Brain MRI

Joe and I worked Tuesday, Wednesday, and a half day on Thursday of that week. It felt pretty good to be doing something "normal." It was also so very hard to try to pretend that things were okay. Just proves that no matter what you are going through, life goes on.

I was told not to eat or drink anything for 4 hours before the MRI. They needed baby boy to be as still and cooperative as possible. I was really worried about this. He had been a very active baby. Technicians would comment on how much he would move, flip, etc. I prayed that the radiologist would be able to capture clear images. I was a little panicked about the test. I was initially told it would take 2 hours to complete the test. I couldn't imagine being in that MRI machine for 2 hours! But, I knew I had to do it for my little guy.

He performed beautifully! The test only took 30 minutes. While laying there and breathing just as they were instructing me to breathe, I prayed that he showed us what he wanted us to know.

While I was putting my shoes on, the tech opened the door and I saw Dr. P. standing in the hallway. He was all smiles and waved. I didn't realize he was going to be present for the test. I just expected him to read the results. Have I mentioned how much I like this doctor? I practically ran to him. He told me that it was a beautiful study and that great images were captured! I informed him that I have been researching and contacting parents across the country to learn more about DW. He had no doubt.

I'll mention that here. I spent the days between meeting Dr. P. and the MRI researching DW and using blogs and facebook to learn information from parents of children with DW. Joe used the time to learn (well freshen up on) all he could about the brain and how it functions. I reached out to complete strangers, and many of them reached right back. It was amazing. One parent actually asked if I could call to talk about it. I did! He told me all about his amazing daughter and how well she was doing. We spoke for a long time and he said he was going to have his wife call me after work. She did! We spoke for a long long time. I asked her everything. We spoke about the technical things and the emotional things. It was so nice to talk with someone who knew what I was going through. I thank God for them.

So, back to the MRI. Dr. P. said the rest of our little guy's brain looks really good. The brain stem was fully formed and looked "normal." He thinks he has about 60% of cerebellar tissue (cerebellum), the cyst is about a size 2 or 3 with 10 being the largest, his corpus collosum is present, he didn't see the vermis, but I have learned since then that perhaps a sliver of vermis was spotted. He believes that based on the condition of the brain and that so far no other abnormalities have come about, our child would be on the end of the spectrum that is highly functioning rather than nonfunctioning. I smiled for the first time in a week. And, I wanted to eat. Joe ran to the hospital gift shop and got me pretzels! Joe asked Dr. P. if we could see the images. I had no clue what we were looking at, but the guys sure knew. More was discussed. We also had to realize that our boy was only 23 weeks along in life and that many things could change/develop before and after birth. We understood this, but we were going to ride this high wave for a little while! Dr. P. said I would continue to see my OB as I would for any other pregnancy and that I would be followed by the genetics department and the doctors of fetal maternal medicine. He plans to see our baby after birth, but he said we can contact him with any questions.


So much about this syndrome is unknown. Every scenario seems to be different. No one is able to predict exactly how babies, children, and adults with this condition will do. I have always been scared of the unknown. I have to fix things right away. I am a control freak. ALL of this was/is out of my control.

Appointment with Pediatric Neurologist

On Monday, January 24, 2011, we met with Dr. P., the pediatric neurologist. He confirmed that he saw a Dandy-Walker Malformation from the ultrasound. He asked us what we knew/what we had been told. I told him the scenario we had been presented with. He listened, really listened. We were educated about the brain and its functions especially pertaining to the cerebellum. (I forgot to mention that in my research over the weekend, I had learned of the importance of having a fetal brain MRI performed. I asked our genetic counselor about the possibility of this, and she said she'd see what could be done.) So, Dr. P explained the limitations of ultrasound and that he couldn't really tell us where our baby's condition stood without an MRI. I asked if we could have one performed. He said, "We're in the process of setting one up for you." I knew I liked him from the moment he walked in the room. He went on to tell us that there are people who live until they are 60 years old before they know they have DW. He explained that there is a huge spectrum of possible outcomes for children with this syndrome from being in a vegetative state (as we were told) to being highly functioning. He needed to see the condition of our baby's brain stem along with the condition of the rest of his brain to determine more. Our MRI was scheduled for Thursday, January 27, 2011.

The FISH results of our amnio were in. They were "normal." So, his survival was less questionable due to the fact that his condition wasn't coupled with Trisomy 13, 18, or 21. Good news.

Questioning Everything

I wish I could say I was strong from day one, that I put everything in God's hands and never questioned, but I questioned a lot. I went through the, "Why me, why us, why MY baby?" I wondered what I was being punished for...why was I being dealt these cards?

Dandy-Walker Malformation

On January 20, 2011, we learned that our boy has Dandy-Walker Malformation. Dr. C. explained to us that the cerebellum is shaped like a figure 8. A part of the brain called the vermis connects the left and right sides of the cerebellum. It is responsible for stability (sitting, standing, walking) and movement. Our son's is missing. Also characteristic of DW is a cyst in the 4th ventricle of the brain. He has a cyst that is in communication with the brain (the brain believes the cyst to be part of the brain now..it's not removable). He promised us that our baby would be very sick. He said we will never walk, talk, feed himself, play on the playground, etc. He said these children have no sense of space and can't control their movements. I asked about cognition. He said he would most likely be like a 1 to 2 year old his entire life. Dr. C. touched my hand and said, "There is nothing you did to cause this. It just happens, and often we never know why."

Do I even need to mention the devastation that Joe and I were feeling?

Many parents in this situation, I have learned, are encouraged to terminate. And, many do. Options were presented to us; I was numb.

I was encouraged to have an amniocentesis performed to determine if there were any chromosomal abnormalities present as well. His survival was questionable, and the doctors felt having this information would give us a better idea of the overall picture. I NEVER thought I would have an amnio performed. Joe held my hand the entire time. I couldn't bear to watch. It was fine; uncomfortable, but fine. Like I said before, I was numb anyway (emotionally). We were told the FISH results would be back in 24-48 hours. The full battery of testing and the DNA micro-array would take a week to 10 days.

We spoke with our genetic counselor for hours that day. At some point she mentioned the possibility of us consulting with a pediatric neurologist since he/she is the doctor that works with DW children. Those of you who know me know that I often don't speak up. Well, I have learned to do so. I asked if that could be arranged. She went to make a phone call. When she returned, she told us we would be meeting with Dr. Painter on Monday. I didn't know this then, but I know it now; he is an angel. God sent him to us.


We finally got home from the hospital around 7:00 that evening. Thankfully my amazing sister was able to step in and care for Ally. It felt so good to hold my little girl that night. My whole world had been crushed. I never felt so desperate and helpless. But, holding Ally gave me strength.

Again, I probably don't need to mention what the next three days were like. I didn't know what sleep was, I couldn't eat, I thought I was going to lose my mind. I spent hours on the computer researching Dandy Walker Malformation, Variant, Syndrome, Complex, etc. I couldn't believe this was now my world.

The beginning

I started this blog in March 2011. Our journey began in January 2011. I post-dated the entries to keep them in time order. Sorry if things come across as confusing.

On January 14, 2011,  Joe and I went for our 21 week ultrasound with the hopes of finding out if Ally would be getting a baby brother or sister. We found out she would be getting a baby brother! I couldn't believe I was going to be the mother of a little boy. My motherly instinct took over; I knew that the tech was concerned about something. When I asked if she was concerned with his heart, she said couldn't get a clear picture of the heart, but she was concerned with something about his brain. Not again. It was so stressful when we learned that Ally had choroid plexus cysts. Oh, how I wish he only had those. We were set up to get an ultrasound through genetics and meet with a genetic counselor the next week. While I was scared and worried, by the following Thursday I had myself convinced it was nothing. I was wrong.