Boston Trip

Our trip started in a hurry as we left late Monday night to beat the epic winter storm. We arrived in Boston at 1 AM. On Tuesday morning we got a call from Dr. Thiele's office to see if we could come in ASAP. Our appointment was originally scheduled for Wednesday so we were really thankful we decided to fly out Monday night.

Getting to the appt. Tuesday was an adventure. Our amazing hostess, Carolyn, elegantly battled the treacherous road conditions and delivered us safely to our appt. It took us 1 hour to get 2 or 3 miles. The roads were unlike anything I've ever seen. There were HUGE banks of snow on every corner.

At the appt. we first met with Heidi, the nutritionist. Oliver wasn't feeling well and slept through most of that time. It was really helpful to be "all ears" as we learned about the complexities of the diet. We left with a packet of information that will help us in the days to come. I am considering starting a completely different blog about this diet since there are few resources and it is fairly new. If I do, I'll let you know. I'm sure you are just dying to read more of my ramblings :) I feel excited about this as an option but, really overwhelmed at the HUGE lifestyle change it will be for us. I know I can do it but, dang if it won't be some long hours (at least in the beginning). We've decided we'll start next week once I have time to buy the food and get a plan. Some of the approved brands are only available online. I also need to spend time at Tidal Creek Co-op and Harris Teeter seeing what brands they carry.

After we met with Heidi we were able to meet with Dr.Thiele. She had another pressing appointment so it was a miracle we got to see her. Our meeting was rather brief because she needed to get home to be with her kids. The weather and road conditions were really bad and the schools were letting out early. We were really grateful we got all this done in one chunk of time.

She answered all of our questions and left us feeling encouraged and hopeful. We asked about the vision risks with Sabril. She said since Oliver was on such a low dose the risk to his eyes was very minimal. She said she wouldn't be worried, at all, if her own son was on it at this low of a dose. She was extremely encouraged that Oliver is responding so well to such a low dose of Sabril. Apparently the dose could be more than quadrupled so there is lots of room to move up. We talked about our options if the diet/Sabril don't work. In a poignant moment I asked "if these 2 don't work are we out of options, other than brain surgery?" She said "there are always options." And that is why we love her so much- you really feel like this thing is manageable, not easy but, manageable. She said if, big if, these don't work our next step would be another EEG to see if we can figure out where the seizure activity is originating. If an area is found then he may or may not be a candidate for surgery. There are many "ifs" but we are glad we understand the process. It feels good to know what we are dealing with and how to move forward.

If the diet works then she said in 3-4 months Oliver can discontinue the Sabril. We'll also try to wean him off the other 2 meds during that time as well. It will be a slow, methodical process so we'll have to be patient as we adjust. It would be a dream come true to have Oliver seizure and med free!!!!

Our next appt. in Boston (barring a crisis situation) will be in the summer. That trip will also include all our annual tests- brain and kidney MRI, EEG, etc. We are looking forward to much better weather on our next trip to Bean Town :)

Throughout our appt. in Boston Oliver was wheezing and looked rather sickly. The nurse thought we might should have him checked by a dr. and by the end of our time with Dr. T she was also recommending that. With the weather being so bad the pediatrician (in the same building) wouldn't see us so we had to schlep to the ER. We were ill equipped to walk through a blizzard but, thankfully it was not too far.

Once in the ER we were taken back immediately. We were there for 8 hours and Oliver got 5 breathing treatments. It was really crazy. There was a chance he was going to be admitted. They tested him for the flu and other viruses. They even speculated that he might have pneumonia. The final virus test came back as RSV. So instead of Andrew having the flu earlier in the week he probably had RSV and then Oliver got it too. Since Oliver already has RAD (Reactive Airway Disorder) the RSV hit him hard. ((In case you are wondering...you don't get diagnosed with asthma until you are 5 because so many kids outgrow wheezing.)) Needless to say we were exhausted! At that point, it had been an enormously stressful and draining string of days. We were very low on sleep and high on stress. By 9 pm Oliver was in a condition that allowed for us to be discharged.

Amazingly, Carolyn, was able to safely pick us up and get us home on Tuesday night. We didn't sleep well mainly due to Oliver's constant coughing but, we were so glad not to be in hospital room. The rest of our time in Boston was in the townhouse. The weather was really bad and with Oliver's illness, going outside didn't make much sense. It was nice to look out the window, onto the street, and feel like we were in a snow globe. The snow was gorgeous and the people watching on the sidewalk was superb.

We ended our trip with a slightly delayed flight home; a blessing since cancellations were abounding. We were so thankful to get home and get rested! Travelling with a toddler has to be on the top 5 of the "Most Stressful Life Events List."

When we got home and walked in the door we saw this...

It is such a big part of the Boston Trip Story. In short it was a HUGE basket of gift cards, notes, babysitting certificates, snacks, wine, beer, etc. It was amazing. It made us cry. We felt totally unworthy of such a luxurious and thoughtful gift. So many friends contributed to it and we felt incredibly loved. We've said this before and it is so true, we are rich in friends. We couldn't ask for a better community of people to be planted in. We'll treasure the date nights and wonderful ways these gifts have pampered us. It is really overwhelming and humbling. Our hearts were so full of gratitude and surprise. It was a really, really great homecoming gift!!!!

One friend put spiral bound index cards in the basket. It is full of encouraging scriptures. It is a treasure! The cover said this:

"He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young."

Isaiah 40:11