Yesterday was a Hard Day

My cousin, Aubree, told me about a friend in her ward who found out that her future grandchild was diagnosed with a Vein of Galen Malformation. Aubree asked if it would be okay if she passed my phone number on to Eileen. I was completely fine with that and later that day I was able to talk with her on the phone.

I told Eileen how sorry I was and I was there to help in anyway. We talked for about an hour. During that time she told me what was going on with her daughter-in-law and her unborn child. She then asked me if I had done a lot of research after I found out about Theo's diagnosis. I told her I started to, but stopped because I couldn't handle reading so many articles about babies not making it. I then told her all the things I wish I knew, all the things I wish I didn't, and all the things I wish people had done for me or said to me. She then asked me about my relationship with God. 

I told her that no matter how many times it was said to me, I never believed it wasn't my fault. I told her to give her daughter-in-law a lot of emotional support because she was going to need it.

I also told her how my relationship was with the doctors and how I regretted not asking more questions, even if I didn't want to know the answers.

I tried to be informative while also being compassionate. 

She asked me if I would mind talking to her daughter-in-law and I told her to please pass on my phone number.

A few weeks later I texted Eileen to see how she was doing. I never heard from her daughter-in-law so I thought I would check in. She told me that the baby wasn't going to make it. The doctors said his heart was going to give out, he would pass, and then they would induce labor so the mother could give birth. Eileen told me that her son and daughter-in-law were at peace, but they were still devastated. 

My heart breaks for this family. I can't imagine how it feels to be told your child has and brain aneurysm and then to find out shortly after that the baby wasn't going to survive.

I've thought about that family every day since I first talked with Eileen. 

Yesterday Eileen posted on Facebook that Liam was stillborn. 

My heart hurts for this family. I've cried on and off all day. Even though they knew he wasn't going to make it, it is still so painful. 

Please go here to read about their story and make a donation if you can.

After spending the morning worrying about this family, Theo, Josh and I drove down to Peoria to meet with Interventional Radiology. 

I thought it would be a quick meeting with Jessica, the APN, but Dr. Fraser wanted to see us too. He asked how Theo was doing and we told him all about Theo's Physical, Developmental, Occupational, and Eye Therapies. He was concerned with Theo's lack of physical and developmental progress. Jessica then mentioned that she could still hear the bruit (vascular murmur in Theo's brain) pretty strongly. Dr. Fraser was hoping to wait until Theo was two years old to do another procedure, but he decided that they would need to do the second embolization within the next two months. 

Before the surgery can be done Theo will need to have another MRI, Echocardiogram, and Angiogram. Jessica is contacting the rest of the "Brain Trust" (Neurosurgery, Cardiology, etc.) to see when they are available. 

Before Dr. Fraser left I mentioned to him that Genetics and Neurology wanted to get a biopsy of Theo's Port Wine Stain (the next time he went under anesthesia), so they could get it checked for a mutation on the GNAQ. This would tell them if Theo has Sturge-Weber Syndrome. Dr. Fraser told me that by looking at Theo, his medical history, and all of his brain scans, he can tell that Theo does not have Sturge-Weber Syndrome. So, as of right now, Theo has an unidentified neurocutaneous disorder, which caused his aneurysm (and subsequently caused his hydrocephalus and brain damage) and PWS. The field of genetics is relatively new so maybe they will find the cause at a later date.

So, Jessica should be contacting us in the next few weeks to get Theo's MRI, Echocardiogram, and Angiogram scheduled. She knows that we live far away so she is going to try and schedule everything at the same time so we don't have to make multiple trips to the hospital.

We have such a great "Brain Trust" team and I know that they will do everything in the power to take care of my child.

Theo's Eleven Months Old

Theo is 11 months old! How did that happen?! We’ve had a very busy month. Theo continues have Physical, Developmental, Occupational, and Eye Therapy AND he goes to the chiropractor three times a week. Everyone is working hard to help Theo with his head control, but he’s not holding his head up yet. We are also focusing on holding and reaching for toys, which he is getting better at. He loves anything that plays music or that is red, shiny, or crunchy. 

[PT with Becca and Cody]

 

[Theo holding his head up] 

 

[Theo is always so tired after therapy] 

[Theo working on holding toys] 

 

 

 

 

 

 

[It's been so HOT here!] 

[My husband is the BEST!] 

 

 [Porter doing "tough guy"]

 

Theo got his DOC Band this month too. Due to his age and the severity of his brachycephaly and plagiocephaly, he has to wear it 23 hours a day for four months. 

[He had a small red mark on his forehead when we first started, but it quickly went away so Theo could wear the DOC Band full time]

 

[Banana rice cereal and peanut butter]

 

 

 

[He's so cute when he sleeps! He's a side sleeper like his mama!]

 

 

 

 

[His R2D2 Mickey Ears fit him when his helmet is on!] 

 

[It's been hot and Theo is teething, so that means I get a lot of cuddles] 

 

[Therapy on the exercise ball]

 

[HOT again!] 

 

I ordered special stickers for Theo's DOC Band. Of course, I had to do R2-D2!

 

 

 

Star Wars photo shoot!

 

 

 

 

[More ball therapy]

 

 

[Practicing sitting up and holding his head up]

 

 

[So TALL!]

 

 

[Teething = Cuddles!]

 

We are meeting with Radiology this month to see when Theo’s next surgery to completely fix his brain aneurysm will be. Theo continues to be an easy going kid who loves his bed, binky, and anyone who smiles at him! 

We love you Theo! 

In other news, Lebron James joined the Lakers. I'm excited because we need to start winning again, BUT it's hard to root for someone your've been rooting against for so long! I guess we will see!

Josh continues to work hard! Some days he doesn't get home until after Theo is asleep, so we try to FaceTime as much as possible during the day. Thanks for working so hard, Josh!

 

 

 

 

I've been staying busy by watching The Office (during Theo's naps), blogging, working out, reading my Star Wars books (gotta get caught up before Star Wars Celebration next year), taking Theo to his various appointments, working with Theo on his "homework" from the therapist, and planning our South America Trip.

Josh is in charge of taking pictures while on our trip. So he bought a fancy new camera and a couple of lenses and filters. I joked that with this new lens he will be able to see Polar Bears! Funny right? You know, because Polar Bears live in the Arctic North and we are going to South? I know, I'm so funny! But hopefully we will be able to see a lot of sea lions, seals, whales, and penguins!