Saturday, December 9, 2017

Kenzie Boston Checkup

On Thursday Kenzie had her check up with Dr Rodan at Boston Childrens Hospital.  Because it can be pretty stressful getting to the hospital on time whilst finding parking (which is very scarce, and the parking garages are tight), we traveled down Wednesday night after work and school, and stayed at a Homewood Suites nearby.   Luckily they have a shuttle that will take you to and from the hospitals, so that made life a lot easier. So hopefully we will be able to pursue that option in the future!

So from the appointment we learned one key thing (that I think we already knew) ... that not much has changed.  That is both good and bad.  The bad is that Kenzie is still between 24 and 25 pounds, and that hasn't really changed much in the last year.  So with that being said at her next appointment Kenzie will be seeing a nutritionist to see how we can try and change that.  It seems to be a mix of what Kenzie can eat and also that all of Kenzie's extra movements burn a lot of calories. 

With that being said, the doctor would like to take the opportunity of Kenzie having started with new therapists at the Morrison Center to try out new drugs on her to help with her dystonia, or extra movements.  So we will be starting Kenzie on a drug called Sinemet, which is used traditionally in patients with Parkinsons disease.  Some individuals who have symptoms or gene changes close to Kenzie have shown great improvement on this drug.  It will be started at a low dose, and slowly incremented upwards depending on how Kenzie does.  Like any drug, there is potential for side effects, and in this case the most common would be nausea, or in some cases it can make her dystonia worse.  However, each doses lasts a little after 4 hours and if she is taken off the drug then the side effects will go away. Depending on how this medication does, will determine whether we continue with it or try a different medication.  There are several medications we can try if needed, like trial and error to see what works for Kenzie.  Last resort would be a discussion about surgery , but that would be a ways down the road and only if we've exhausted all other avenues.  The dystonia is important because it seems to be the single thing that is slowing Kenzie down the most in her development. 

So we will be going back down to Boston again in February.  She will have 3 appointments in one day.  She will be seeing Dr Rodan for her normal check up, she will be seen at the orthopedics clinic, and by the nutritionist. So that is 3 appointments in one day, which will make for a long one.  Hopefully we will stay at that Homewood Suites again, so that we don't have to add 4 hours (round trip) of driving in as well on top of the tired kids!!! 

We are also waiting for some lab work to come back for Kenzie, and we do not expect anything earth shattering.  If needed, we will update everyone. 

Thanks for keeping Kenzie in your thoughts and prayers!


Tuesday, December 5, 2017

Merry Christmas... early

We got our Christmas photos in... we are so happy with how they came out! 
















Monday, November 13, 2017

Kenzie's First Day

After numerous evaluations and lots of paperwork... today was Kenzie's first day of Pre-K!  We are blessed that Kenzie was able to get in to a great center thanks to her awesome speech therapist!  Kenzie will be going for 3 hours a day, 5 days a week.  While there, she will have 120 minutes per week each of speech, occupational, and physical therapy.  She is labeled "1 to 1", meaning she gets her own ed tech to assist her as needed.  Today she did some coloring, played with blocks and puzzles, and was very interested in the other kids.  Her speech therapist e-mailed us a picture during the day... as you can see, she absolutely hates it there, haha!



Saturday, November 11, 2017

Kaitlyn's Birthday

We kicked off Kaitlyn's birthday weekend yesterday with a trip to see Thor: Ragnarok.

Today for lunch we went to one of Kaitlyn's favorite restaurants, Kobe, for some Hibachi.  They sang happy birthday to her in English and Japanese!  Afterwards, we came home for some present opening and cake!  Tonight we will be having ravioli and garlic bread per the birthday girl's request. 














And I have to share a photo of Kenzie because it's just so stinking cute!  She always enjoys playing "Where's Kenzie"  when she is wearing hoodies, but this shirt made it even more fun!




Thursday, November 9, 2017

Kaitlyn's First Communion

Here's the photos we took of Kaitlyn's First Communion and Confirmation.  We are still waiting on the web link to get the professional photos from during the Mass.  Once we get them, we are looking forward to sharing them with you all.

We were so happy that so many of our family and friends were able to celebrate with us!

Kaitlyn with her service poster...  All the kids were required to do two hours of community service.  Kaitlyn did hers at the Animal Refuge League.