We are home. Earlier than anticipated, earlier than planned. Sorting through the information we were given, and deciding the best next steps.
For the next 3 days, as we celebrate Christmas together as a family, we pause and wrap our selves in the gift of love.
Thank you for your love and prayers while we were at Mayo. Thank you for your support while she endured 3 appointments and or tests a day while we were there. Thank you for covering us when we needed it most.
We have choices on the table, and are praying on them, and looking for discernment. Prayers are greatly appreciated.
Once decisions are made in the next week or so, I will update here.
For now we pause and enjoy being together.
Merry Christmas, God Bless
Today was a long day. She was admitted to the hospital for a 24hour eeg and EKG. The goop for the leads on the eeg causes her rashes and itching. It comes off at 7am. Then 4 appointments and scans tomorrow starting at 9am. She is wore out (I am too).
The people here are wonderful, so very kind!
We have been told starting Friday we should not go outside for the rest of the weekend. Sunday is supposed to be the worst. Those orders sound good to me after this very long week!
Please keep praying!
Things are going OK. Packed schedule, and Kayla is wore out! Still in the process of testing and consultations. Today is -10°F. The cold is ridiculous!
We have met new friends who are battling their own journey. God knows who and what we need at exactly the time we need them.
The lumbar puncture showed her csf pressure 3x's what it should be. We will know more Monday when all of the neuro tests ordered are back.
Please continue to pray
Last "night" finished at 2am, and today began at 5am. Kayla's neurologist at home is AMAZING! We are so blessed to have her on her team of drs. She spent over 3 hours on the phone with me preparing for today.
Today, Kayla had 3 appointments. The first appointment lasted 2.5 hours. The second appointment lasted 2 hours, and a test they ran today lasted a little over an hour. Kayla was so wiped during the test she was having a difficult time staying awake.
The people here are very nice. The doctors do things a bit differently. It will be an adjustment. Not wrong or right, just different. They are still working out hheer schedule. We should have it completed by tomorrow afternoon. They added somethings today. We are praying that is not going to extend our trip. We really want to be home to celebrate Christmas!
Tomorrow will be another hard day starting at 5:30am. She has a 4 hour test. Then she will undergo anesthesia so they can obtain more testing.
Please continue to pray for her safety, the wisdom for the doctors, and the answers to what is going on.
It is beautifully freezing here! Literally freezing. Today was their coldest day this year. Tomorrow is supposed to be -10°. I will upload some pictures from today.
God bless you all!
3 hotels later we are finally settled. The first hotel when I booked with them said they have a shuttle to Mayo that runs until 10pm. When we got there Friday night, we were told the shuttle only runs until 6pm and does not go to Mayo. We were also told that they do not have room to put her wheelchair in the back of the shuttle, even if we fold it up.
The second hotel was not a good fit either. The pictures looked great, but there were quite a few surprises! Kayla was too big to fit in the shower in the room, the toilet was a public toilet, and there were a few other things.
It took 2 hours for the cab to pick us up at the second hotel due to the weather and the high demand of cabs around here. Which would have been fine, except I had to sit at the entrance waiting for him to arrive. It was cold!
The people here are SO nice! It is no wonder why people do not like people from CA. No one we have encountered is grumpy, in a rush, rude, snide, or short. Random strangers have helped us along the way, without us even asking. If it was not so cold here, this is where I would want to raise our girls.
Kayla is very tired. With everything yesterday, and traveling the day before she has not had a lot of time to rest. Today we will stay in and she can sleep all her body needs. The cold has bothered her some. No anaphylaxis, but hives and flushing.
She is now registered at Mayo, and everything begins tomorrow at 7:30am. We will take the 6:10am shuttle from the hotel to the drop off point. From there it is about two miles to where we need to be. The area on the "subway" (what they call an underground walkway, NOT a train) that we will be walking through tomorrow is closed today. We are leaving early since I am not exactly sure where we are going.
I will attach a picture of the snow yesterday. It started snowing about 2 hours before I took the pictures. It is really pretty.
Hope everyone is well
Today we are heading out to Mayo. The temperature there looks really inviting (says no one from CA, ever)! It will be a long journey today. Kayla had anaphylaxis to cold weather in the past, and when she is over heated it causes her seizures. We are prepared for both, but praying for neither. Our flight leaves SFO at 1245pm. I will do my best to keep this updated. We will receive her schedule tomorrow. Please say prayers!
We arrived safely. Kayla is very tired (and hungry). The hotel is cozy and the people here are VERY nice! Flights went well. The ground is covered in snow. Thank you for your prayers!
Kayla is 14 years old. She has been fighting for her life since she was 2 years of age. 11 times before the age of 2 - CPR was preformed on her. She had 2 strokes before 2.5, and a seizure. To say life was a nightmare is an under statement.
At 3, things became more difficult in a different kind of way. Kayla began with anaphylaxis, pneumonias, endless infctions, hives covering her body, difficultly breathing, and low oxygen saturation. As she got older, she started with gi issues, dislocations, faintings, memory issues, brain fog, extreme fatigue, and seizures.
After endless labs, scans, biopsies, and testings, we have learned that Kayla has 7 rare diseases, 5 which are considered life threatening.