Category: Family…

Ophthalmologist and Swallow Study…

· 36 Comments ·

Tori had her eyes dilated this morning for her ophthalmology appointment this morning. She did not enjoy that. 😄

The anatomy of her eyes looks great – no indicators of any neurological diseases…yet. However, the doctor said that based on the MRI she wouldn’t be surprised if her vision has deteriorated.

IMG_7580

The doctor said that if she ends up having Krabbe’s Disease, she will likely go blind. So that is another thing to pray against.

She then had a swallow study at 11:30am, and she didn’t like them putting her in the high chair to try to feed her there. I told them it wouldn’t work 😉

IMG_7581

IMG_7582

We waited for a few hours for the results…and they aren’t what we wanted to hear.

Tori is aspirating when she swallows, meaning that it is going into her lungs. She also has no gag reflex. This means that she will have to be fed by an NG tube for now and possibly have to have a tube inserted into her stomach eventually. They did not seem optimistic that this would ever be healed because these muscles are controlled by her cranial nerves, and those are obviously not working.

To say today has been tough is an understatement. I will never get to breastfeed her again. She will likely never eat through her mouth. It seems like each day we find out that something is wrong with our previously healthy baby girl, and we are devastated.

Please continue to pray for a miracle.

http://www.facebook.com/prayingfortori

Team Tori Day

· 2 Comments ·

Some amazing friends of ours decided to get together and plan #TeamTori day to show support and raise awareness for prayer for her. We are so honored!

What they are asking people to do is to wear blue (Brennan is an alumnus of Penn State) or pink (since Tori is a girl) this Wednesday, and to print out this beautiful doodle that my friend Libby drew. Then, take a selfie holding the doodle and post it with the hashtag #TeamTori so that we can see all of the pictures!

https://www.dropbox.com/s/nf0xlgvg4kginrk/Team%20Tori%20sign%20-%20pdf.pdf?dl=0

Also, as requested, here are the links to the sites people have set up for Tori to raise support:

GoFundMe: http://www.gofundme.com/luphsw?fb_action_ids=10205843215261819&fb_action_types=og.shares
T-Shirts: http://www.tshirtsfortori.org/

Meals: http://www.takethemameal.com/meals.php?t=QCLW4205

We are amazed by how many people love our Tori and are praying for her. Please continue to pray for a complete miracle!

http://www.facebook.com/prayingfortori

Not Much to Update Lately…

· 6 Comments ·

We haven’t posted since Friday because there hasn’t been a whole lot to say. We’ve been in the hospital with her since Friday evening and will likely be here through tomorrow. I’ve posted small updates on our Facebook page. Tori has been eating better and is much more hydrated. She has slept most of the time we have been in the hospital, so we are praying that the sleep is helping her to heal.

We are so thankful for the support that we have received – all the notes, visits, texts, Starbucks cards, and we are most humbled by the GoFundMe page that was set up for us. We have no idea what we are facing in terms of medical bills on this completely undesirable path, and we know that people want to help us. We are so unbelievably overwhelmed by the love that is being shown to our precious Tori. We have been so well cared for by the nurses here, too.

My dad arrived last night from California, my mom has been here for a week now, and my Uncle Patrick has been here since Saturday morning. Brennan’s family has come to visit as much as they can. These distractions are wonderful.

Right now, we are coping by living a minute at a time. I can’t handle thinking about the possibilities of what might be wrong with our beautiful baby girl. So, I focus on the good things – that she is eating better, that she doesn’t need the IV anymore, that she is sleeping well. If I think about anything else, I break down.

Thank you for your prayers. We believe that God can choose to heal her completely and we are pleading with Him to do so. The knowledge that there are tens of thousands of people all over the world praying for her gives us hope and encouragement.

We will update as we have updates…

Much Needed Answers

· 6 Comments ·

On Monday morning, we got up early so that we were ready to go if we had any chance to get her into the neurologist early. I called the office right at 8:00am only to find out that they did not have any pediatric neurosurgeons or neurologists in on Mondays, but the scheduler said that she would have the Physician’s Assistant look at the CT scan and call me if she could provide insight.

She called me an hour or so later and told me that she sees enlarged ventricles which have produced extra fluid around the brain.

Fluid.

The original theory by the pediatrician and the thing the ER doctors said wasn’t there.

Remember that we went to the ER because she wasn’t eating well that day and because the pediatrician suspected fluid.

When the doctor came back with the ct scan results we specifically asked if it showed fluid. She said no. She kept saying “brain abnormalities” and we respected her honesty about not being a neurological expert. But we left freaked out.

The PA said that we would obviously learn more tomorrow, but that we shouldn’t be too worried at this point because it seems like it will be easily treated.

We felt relieved, angry, worried that they were wrong, annoyed that we have been so freaked out that our baby was going to be permanently affected, and yet hopeful that she is going to be just fine, all at once.

We didn’t post about it yesterday because it wasn’t conclusive and it wasn’t the neurologist who told us that information. We didn’t want to give false information only to retract it. We apologize for not saying anything but we thought it was best.

Our pediatrician personally called us to get an update and was so relieved to hear what the PA said. I had called earlier in the morning to let them know about the “brain abnormalities” comment so he was concerned enough to call us himself. He said he hopes they will treat it ASAP because that is what is best for Tori.

That brings us up to today.

The neurologist said that there is extra fluid in and around the brain and that the ventricles are enlarged. He said that this normally doesn’t affect development so he thinks something else may be going on.

He worked his magic and got us an MRI appointment for tomorrow at 3:00pm. He was prepared to admit us to the hospital so that they would have to do the MRI overnight. But they managed to rush it.

The doctor said he would try to read the MRI and get back to us by tomorrow evening.

So we wait again, and we still don’t have complete answers, but we have progress.

Update: they just called and moved the MRI up to 10am tomorrow.
Thank you all for your prayers! Please keep praying.

IMG_7359