Monday, December 1, 2014

Trip Out West

It's hard to believe but Caleb is nearly finished with medical school!  The time for residency interviews has arrived.

We made the decision several months ago to branch out and apply not only to programs in New England, but across the United States.  Caleb is interested in practicing rural family medicine and we really want to find the program that will best prepare him for this unique field of medicine.

Scanning the family medicine programs throughout the United States was quite a daunting task.  To give ourselves a starting point, we turned to our most trusted tool, "The Google."  A quick search of the "Best Places to Raise a Family" later and we had some serious contenders!  We joked about not applying to any programs South of the Mason Dixon line due to our inability to handle hot weather.  Something about growing up in Northern Maine has rendered us incapable of tolerating temperatures above 80 degrees F.

After much contemplation, applications were sent out to programs in Bangor, ME, Portland, ME, Augusta, ME, Concord, NH, Duluth, MN, Grand Junction, CO, Provo, UT, Ogden, UT, Boise, ID, Vancouver, WA, and Klamath Falls, OR.

Caleb and I decided that it would probably be best for me to travel with him to his residency interviews.  After all, if we are going to relocate our family for three years, it is probably best for me to see the cities myself and meet the people.  Together, we will decide if each city is a place we can see ourselves living for the next few years, if the programs provide the kind of education he is looking for, if we fit with the people we will be spending so much of our time with, and if they have the resources we need/want for our sweet Rosalie.

The most cost-effective way we found to travel was to do the majority of Caleb's interviews out West in one large swoop.  We toyed with the idea of bringing Rosie along with us for this trip, but decided against it for many reasons (the timezone changes, the nonstop nature of our trip, and the need to fully immerse ourselves in each program's unique atmosphere, to name a few).  We feel so fortunate to have parents we love and trust enough to leave our girl with over the course of this trip.  Leaving her was extremely difficult, but judging by the pictures and videos that we have received, she is adjusting very well.  I don't think Pepere's inclination to spoil her with ice cream hurts.

And so our adventure has begun.  I will try to blog as often as possible so you can follow our adventures across the Midwest and Northwest.

Sunday, June 8, 2014

Sipping from a Straw!


I have been working very hard to get Rosie to learn how to drink from a straw.  For kids with Down syndrome, straw cups are WAY better than sippy cups which can promote tongue protrusion (a tongue hanging out of mouth at rest).  When using a straw, they have to be able to close their mouth around the straw, suck in, and pull their tongue back a bit.  This helps develop some of the muscles important for clear speech down the road.

We have this great cup called a Bear Bottle from ARK.  Basically, there is a valve at the bottom of the straw that prevents the fluids in the straw from dropping back into the cup after every sip.  This makes it so Rosie has to do less work while learning how to sip.  Another neat feature is that you can squeeze the bottle and fluid will be pushed out of the straw (kind of like what happens if you squeeze a juice box)!  Thanks to this, I was able to teach Rosie that fluid comes out of the straw before she was able to suck it out herself.

This week, Rosie figured out how to suck water out of the straw!  The only problem was that all the water she got in her mouth dribbled out like someone who tries to drink after they have dental work!  Her speech therapist and occupational therapist recommended that we try something thicker than water.  I started by trying to have her suck food out of her baby food pouches instead of feeding it to her with a spoon.  This morning, we progressed to trying a smoothie in her Bear Cup and it worked!  She is able to suck the smoothie out of the cup and swallow it instead of it dribbling out of her mouth!  We will keep practicing with smoothies until she is ready to move to thinner liquids.



For more information about the the Bear Bottle, check out ARK's website:  http://www.arktherapeutic.com/BB100AR.html

A similar cup is made by Talk Tools.  For more information about that cup, here is the link to their website:  http://www.talktools.com/honey-bear-w-flex-straw/.

Saturday, April 26, 2014

Happy Birthday, Rosie!

One year ago tonight, Caleb drove me to the hospital to have a baby.

Here I am at 12:21AM on 4/27/2013, proudly showing off
the fact the my contractions were less than 3 minutes apart.
Rosalie joined us less than 10 hours later!

When I look at the picture above, all of the emotions from that night come rushing back.  The air felt like it was charged with an electric excitement.  After months of waiting, we were finally going to meet our sweet daughter.  We were ready.  Well... we were as ready as any new parents can be!

Caleb and I had no idea what Rosie's first year would bring.  We tried to prepare by reading books, articles, and blogs, but much would be unknown until Rosalie actually made her grand entrance.  Some of the things we learned were scary.  Long stays in the neonatal intensive care unit (NICU), open heart surgeries, gastrointestinal surgeries, difficulty feeding, etc.  Rather than letting ourselves get consumed with fear and trepidation, our strategy was to arm ourselves with knowledge, but then roll with the punches.  Thanks to this plan, we were able to thoroughly enjoy my pregnancy and at the same time, were prepared to deal with any issues that could arise upon her arrival.

Tonight, when I was putting Rosalie in her pajamas, I decided to tell her all of the ways she beat the odds presented to us in the books and articles we pored over before her birth.  I thought it would be fun to share with all of you as well!

Delayed Dental Eruption
While many children with Down syndrome only get their teeth between 1-2 years old, Rosalie's first tooth came in when she was around 9 months old.  She now has three!!!!

Low Muscle Tone
Yes, Rosie does have some low tone, but it is not nearly as bad as it could be.  In fact, she is now able to roll over, sit up, bear weight on her legs, etc!  While she hasn't started crawling or walking yet, that certainly does not mean that she isn't mobile!  She has become quite efficient at rolling and pivoting around on her belly to get where she wants to go.

Orthopedic Problems
Kiddos with Down syndrome can have a variety of orthopedic issues, such as hip dysplasia, scoliosis, etc.  Rosie did have some hip dysplasia when she was born, but a couple months of double diapering took care of it!

Gastrointestinal Problems
It's not uncommon for babies with Down syndrome to have serious problems with their gastrointestinal tracts.  Some children even require surgery in the first few days of life to correct these problems.  Luckily for us (depending on how you look at it) Rosalie pooped pretty soon after she was born, letting us know that her GI tract was just fine, thank you very much.  

Difficulty Eating
Due to low muscle tone, many newborns with Down syndrome have difficulty eating.  It's not rare for them to need feeding tubes.  We were very lucky in that Rosalie was a pretty good eater when she wasn't sleeping (which she did a lot).  I was even able to nurse her for the first few weeks of her life!  Our inability to continue had nothing to do with her low tone.

Hearing Problems
Although Rosalie failed her initial newborn hearing screen, she passed the follow-up!  Hearing problems are likely to develop over time, but we are going to stay on top of it with frequent hearing exams.

Infantile Spasms (Seizures)
While we had a brief bout of being worried that Rosie was having infantile spasms, she passed her EEG with flying colors!

Eye Problems
Okay, yes, Rosalie is farsighted and needs glasses (super cute pink glasses, might I add).  But would I consider this a problem?  The only problem is the increased time it takes me to run errands because of all the compliments she gets!

Heart Problems
Approximately half of all babies born with Down syndrome have heart defects.  Rosalie did have a few holes in her heart when she was born, but they have all closed except for a teeny one!  Tonight I told Rosie that before she was born, Caleb and I didn't know it, but we had holes in our hearts too.  Her arrival into our family successfully filled these holes and we are recovering well.  :)


  After telling my Rosebud about the obstacles she has overcome, I told her about all of the things the books and articles didn't tell us.  They didn't tell us was how much of an easygoing, delightful baby she would be.  The books didn't tell us how she would sleep through the night at 2 months old.  The articles didn't talk about how she would bring joy to everyone she would meet or how our families, friends, and communities would rally around her and celebrate her every accomplishment (big and small).  I wish the books and articles could have put into words how I would feel every time I look into her beautiful almond shaped eyes and how I wouldn't see Down syndrome, just my sweet daughter.

When we got Rosalie's diagnosis, I didn't think I had what it took to be the parent of a child with special needs.  Now, I can't imagine being a parent to anyone other than my Rosie Girl.  I am so thankful for being given the life I never knew I wanted.

Happy first birthday, sweet girl.



Wednesday, February 19, 2014

Infantile Spasm Scare

A few months ago, I noticed that Rosalie was having some rhythmic, spastic episodes.  I got nervous about it because we had just learned about infantile spasms a couple weeks earlier at the Maine Down Syndrome Network's Annual Conference.

Infantile spasms are a serious condition that can affect 1%-5% of children with Down syndrome.  Luckily, something about that extra 21st chromosome makes it so that kiddos with Down syndrome typically have milder cases of infantile spasms and they tend to respond better to treatment than typical children do.  Having infantile spasms increases the risk of epilepsy later in life.  If left untreated, it can result in uncontrolled seizures, decreased IQ, and even death.

I was able to take a video of her on my phone during one of her episodes.


The next morning, I called Rosalie's AMAZING geneticist, Dr. Rosemarie Smith, and her office asked me to e-mail them the video.  A few minutes later, I got a call from Dr. Smith saying that she didn't think it was infantile spasms, but that she wasn't 100% certain, so she e-mailed the video to Dr. Peter Morrison, a pediatric neurologist.  Less than 5 minutes later, Dr. Morrison himself called me!  He echoed Dr. Smith's suspicion that it was not infantile spasms, but asked us to come in that day for an electroencephalogram (EEG), just to be certain.  EEGs are tests that use the electrical activity of the brain to track brain waves.  The office let me know that the test would work best if Rosalie was very drowsy or sleeping, so I made sure that she skipped a nap before the appointment.

I was so impressed with how promptly my concerns were responded to and the smooth communication between the different offices!  We are very lucky to have these wonderful providers in Maine.

That afternoon, I brought a sleepy Rosalie into Dr. Morrison's office.  While we were in the waiting room, we got quite a surprise:  Caleb showed up!  The doctor he was working with gave him part of the afternoon off to come to Rosalie's EEG.  I was so happy to have him there!

The first thing the EEG technician did was measure Rosalie's head and mark where she was going to put the electrodes.  The picture below shows Rosalie in the process of getting marked up.



Below is a picture of Rosalie with the electrodes all hooked up.  Thanks to skipping a nap and a delicious bottle of milk, she was very sleepy at this point.


The tech wrapped gauze around her head to keep the electrodes in place during the EEG.



After Rosalie was all hooked up, the technician dimmed the lights and I held my baby girl while she slept.  The test lasted about 45 minutes or so.  Caleb and I watched as Rosalie's little brain waves moved across the screen.  Every now and then, the technician would mark a certain time in the EEG and type something on the computer.  It was usually after Rosalie had moved or made a noise.  I'm sure her small movements affected her brain waves, so she was probably just taking accurate notes to help the neurologist read the test.  Below is a sample of what the screen looks like during the EEG.  This is not from Rosalie's EEG, it's just something I found online.


After the test was over, the technician cleaned up baby girl and we were on our way.  Before we even had the chance to leave the parking lot, Dr. Morrison called Caleb with the results.  Rosalie's EEG was NORMAL!  :)  We were so very relieved that she wasn't having infantile spasms.