Sunday, November 18, 2012

30 Days of Thanks - Day 14 {Sleep}

Uninterrupted sleep may be a thing of the past so today I will be thankful for sleep.  I am thankful for a warm bed to sleep in with clean sheets and blankets.  I am thankful that I have a large enough bed to share and still get restful sleep.  I am thankful for the little ones who sometimes make a surprise visit to our bed in the  middle of the night (not last night though, that was a rough one).

All in all, I am thankful that my children have good sleep habits (most of the time).  They do wake up by 6 am every morning but they never give us problems going to bed.

Two weeks ago, November 3rd, we finally switched Teagan's crib over to a toddler bed.  Jay has been wanting to do it for some time but I figured don't fix what isn't broken.  Unlike Nathan, she never attempted to climb over and I didn't want to screw up her good sleeping habits.  I am thankful that she stays in her toddler bed (except last night when she showed up near the foot of our bed at 1:30 am telling me she needed help up).

Friday, November 16, 2012

30 Days of Thanks - Day 13 {Laughter}

Nothing beats a good laugh, especially when you are feeling stressed and overwhelmed.

Laughter and I are like BFF's.

Laughter never fails to cheer up my soul when I am feeling down.

I LOVE laughter.

Wednesday, November 14, 2012

Feeding and Swallowing Evaluation

Never did I realize how much of the body is involved in the process of eating.

I took Nathan to the Feeding and Swallowing Center today to be evaluated. I was nervous in anticipation of not knowing what to expect. Would I get answers? Would I fail my "test"? - An example of a mom who was a failure in getting her child to progress, eat solid food, and thrive.

I completed my homework - three consecutive day food journal and bowel movement journal. A lot of food offered, a lot of food refused and left behind, and a steady intake of 1.5 cal pediasure. Bowel movements frequent and varied consistency.

The Center for Pediatric Feeding and Swallowing at St. Joseph's Children's Hospital was thorough in their evaluation. First they took a history - medications, diagnosis, birth weight, feeding history, concerns, etc.

Speech therapist evaluation

A speech therapist evaluated his speech. I mentioned I could understand him perfectly but that others sometime needed a translation. She had no issues understanding him.

Occupation therapist evaluation

An occupational therapist evaluated him from head to toe. She had him making muscles, doing sit-ups and supermans, she evaluated his posture and spinal alignment, and also observed his walking gait. The concern I expressed about his flat feet when he was 3 was confirmed today. His feet are pronated.

How does pronation of the feet affect his feeding? Well, apparently the position of the feet affects posture which in turn affects eating.

The options available to correct this issue were arch supports to slip inside his shoes or orthotic braces. I decided that the foot braces were the best choice.  At this point I want to attempt to eliminate all obstacles potentially interfering with eating.

The order has already been written for the Sure Step orthotics pictured below and he will be measured at his follow up appointment in three weeks.

Image Credit: Sure Step

What else - I should be helping Nathan to do sit ups to increase core strength and hang from a pull up bar to loosen his shoulder muscles.

Meal time observation

I was instructed to bring a meal Nathan likes to eat, including his utensils.  Not really sure what would pass his test, I packed up a mini pancake, butter, syrup, and a yogurt, along with his Donald Duck fork, and a spoon.  For the meal they heated up one mini pancake, I smeared the butter on it, and Nathan poured the syrup on.  Usually he picks up the pancake and nibbles along the edge but today he had me cut it into pieces and I stabbed the first piece for him.  Sitting in front of a two way mirror and a television playing Toy Story, he fed himself  the first bite (although I had to pause the movie until he did take the bite).  The door opened and he got congratulated.  I continued to stab his fork into pieces of pancakes and sure enough he started to gag.

So I found out he has no problem chewing or swallowing.  His chewing is a bit lazy, chomping, but he is chewing.  The speech therapist observed him being able to move his tongue to both sides of his mouth without food in it and he is able to move the food in his mouth to a certain extent with his tongue until it comes to swallowing.  When he swallows, rather than moving the forward back with his tongue, he closes his mouth and sucks the food to the back of his throat which sometimes gets caught up and hence the gag.  When he gags, his tongue freezes and he continues to gag.  So now I need to remind him throughout his meals to chew with his back teeth and wiggle his tongue, lick his lips, or anything else that causes tongue movement.  I was told you can't gag if your tongue is moving.  I even observed her stop the gag by having him move his tongue or by putting pressure under his jaw/closing his jaw.

Doctors observations and recommendations

Increase his dose of Prevacid from 15 mg to 30 mg, moving dose to first thing in morning on an empty stomach, waiting 30 minutes before eating.

Supplement with Miralax daily instead of as needed to create regular bowel movements.  He has frequent and inconsistent textured bowel movements possibly causing abdominal discomfort and affecting his posture and desire to eat.

Return for a follow up in three weeks to create a more concrete plan.


I am so happy I finally completed this evaluation and only regret not doing it sooner.  I did mention the chiari 1 malformation, but the doctor does  not believe it is playing a part in his lack of interest in food.  If anyone reading this is experiencing similar feeding issues with your child, I highly recommend a feeding and swallowing evaluation.  An initial evaluation can't hurt the situation.

Tuesday, November 13, 2012

30 Days of Thanks - Day 12 {Lazy Days}

It seems appropriate to be thankful for lazy days, since today was a lazy day.

Being one of the busiest times of the year, between the holidays and full schedule of holiday and newborn photo sessions, it is nice to get a breather here and there.  Although today was the perfect lazy day, I accomplished alot.  It also helped that is was somewhat overcast because clouds lead to naps.  Teagan succumbed to sleepy dust while snuggling one of my favorite (houndstooth) wraps and I managed to complete three clients' sessions.  I know I have a warped idea of being lazy.  For the record, hand washing a king size comforter in the bath tub because you are too lazy to haul it to the laundromat is not being lazy. 

Tomorrow is Nathan's evaluation at the Feeding and Swallowing Clinic.  I am nervous, I don't know why, but I feel like I am going to fail a test and get reprimanded, like him not eating is my fault in some way.

Monday, November 12, 2012

30 Days of Thanks - Day 11 {Veterans}

Today I am thankful for veterans, both young and old, who have risked their lives to defend our country. I am also thankful for their families and loved ones who stood by them through deployments. Thank you for your bravery and for protecting our freedoms.

Sunday, November 11, 2012

30 Days of Thanks - Day 10 {Nice Weather}

There is nothing better than a 60 degree day in November after two nasty weeks of storms - Hurricane Sandy and then the nor'easter the following week, did she have a name? Anyhow, today was a nice reprieve from angry Mother Nature and I am thankful for the mild temperature and sunshine we enjoyed today.

But it does get better! A family mini photo session on a gorgeous November day driving my brand new prop van, I mean family mini van getting 28 miles per gallon!!

Saturday, November 10, 2012

30 Days of Thanks - Day 9 {Weekends}

Just kidding, I really do love weekends even if my responsibilities are the same as they are Monday through Friday. I love weekends because Jay is home, because he doesn't have to wake up early and rush out the door. One of the kids always wakes up by 6 am so I'm usually still up bright and early but we make the most of it. Today I spent the majority of the day doing laundry, stripping all our beds and washing sheets/comforters, vacuuming, and bathing our cats to rid our house of fleas once again.

Regardless, we all enjoyed our day and took a break to eat lunch at the pizzeria with grandma and grandpa. I wish Nathan would have taken just one bite of his pizza but I hold hope for his evaluation on Wednesday.

Weekends are relaxing! And I get another day to enjoy this weekend.

Friday, November 9, 2012

30 Days of Thanks - Day 8 {Megan}

Today I am thankful for my sister in law. She is married to the same breed of man, our husbands are brothers, so we can relate to each other on a lot of things.

Whenever we visit them in Virginia we always have a blast and declare we are leaving NJ to be with them.

But today specifically, I am thankful she is an extremely knowledgeable veterinary technician. If it weren't for titles I would swear she were a vet. Thank you, Megan, for your knowledge, guidance, and honesty. <3

...and yes, I know we have overweight cats.

Thursday, November 8, 2012

30 Days of Thanks - Day 7 {Education}

I am extremely thankful for the education I have had because it has made me the well rounded person I am today. Although I am not using my college degree in English, college itself has broadened my horizons, taught me many life lessons, and helped me meet and respect people outside of my immediate small town world.

But right now, this moment, I am thankful for preschool and the education my children are receiving. They have a wonderful and caring teacher, Miss Mary, and always come home with new knowledge. I usually notice it when Nathan says something days later and my response is usually, "How did you know that, who taught you that?". Of course I know it was preschool if it wasn't me or my husband.

Preschool is giving them a break from me and me a break from them and also letting them meet new kids. It's just a win-win-win situation.

Wednesday, November 7, 2012

30 Days of Thanks - Day 6 {Grandparents}

Grandparents rock! I don't think I appreciated the role grandparents would play in our lives (my husband and myself - and our children) at first. When we brought Nathan into our family we gave our parents new roles in our lives, a promotion of some sorts. {smile}

Becoming a mom and dad for the first time, we wanted to call all the shots, make all the decisions. But after we realized how much nicer life is with the help of loving grandparents, we were a happier family.

So we are thankful to have Jay's parents and my dad in our lives. I know if my mom were still living she would fit right into this category as well.

Grandma Eileen - She has the patience of a Saint. Honestly the only person I know with enough patience to deal with Nathan at meal times. And she is always optimistic, definitely bringing balance to my cynicism. most importantly, our kids love grandma and her energy, energy despite working as a full time psychiatric nurse. I am sure she sleeps like a rock after spending time with them. I love the way our kids anticipate her little surprises and treats.

Grandpa Bill - He is Mr. Fix-It Extraordinaire, lover of gadgets, flashlights, tools, and elaborate displays of toy trains. What child wouldn't love him when every problem can be solved with a Boy Scout pocket knife? We are thankful for morning visits from Grandpa Bill carrying a paper bag full of everything "birthday bagels" and patiently lighting the candles and repeatedly singing happy birthday on our unbirthdays. What I am thankful for is my father in law's willingness to watch the kids while I photograph clients even on short notice and his willingness to entertain my crazy crafthole ideas, usually involving wood and his tools.

Grandpa Frank - Sometimes I think this is who Nathan gets his energy from. I am fortunate to have a dad who is a child at heart and is always willing to end his work day helping out by playing with our kids. I love that he makes and shares virgin piƱa coladas with Teagan - she is hooked! Grandpa Frank can be found jumping in our bounce house with the kids, and sometimes getting reprimanded for his crazy ideas like putting a sprinkler in the middle of the bounce house, I still laugh at this incident. I am thankful for my dad, for keeping me company on lonely days, and for bringing his playful energy when I am exhausted.

Like I said, grandparents are awesome. They treat their grandchildren as their own, with nothing but love and concern for their future. I am so fortunate to have a great relationship with all the grandparents in our lives, especially because I know not everyone has this type of relationship.

Monday, November 5, 2012

30 Days of Thanks - Day 5 {Stress Relief and Creativity}

While some days the only cure for stress may be medication, most days enlisting a bit of my creativity helps tremendously.

I am thankful for being a creative crafthole (made up word comprised of two different words, use your imagination, to describe my love of all things craftastic).

I love sewing clothing, piecing together quilts, woodworking, but most recently knitting has been my therapy. The rhythmic and repetitive motions are quite calming for me. Also since it doesn't require much thinking beyond keeping track of how many stitches I cast on, I can knit anywhere and even with my eyes closed. I don't know how my friend knits intricate sock patterns with two toddlers lurking about.

Breakfast with Nathan this morning was another epic fail. Grandpa Bill brought a box of sprinkle munchkins from Dunkin Donuts and our goal was two munchkins. We should have stopped after one, because I had another mess to clean. What kid struggles to eat munchkins, it kills me. Now I am all ticked off and stressed. I digress - thankful for stress relief (whether it be medication, sewing, knitting, running, etc). I will be knitting up a storm this afternoon just as soon as I successfully transfer a client session to the server. And the best part of using creativity as stress relief is the sense of satisfaction after completing a project.

Sunday, November 4, 2012

30 Days of Thanks - Day 4 {Doctors and Hope}

I am so thankful to have a team of doctors caring for Nathan whom I trust.  This isn't what I was originally going to write about today but after the mealtime battles we have fought and lost all day, I look forward to Nathan's evaluation at the feeding and swallowing clinic next week - this gives me hope.  Even though today we lost the battle today, I am hopeful that the specialists will have answers for us or will lead us down the right path.  And if no immediate answers are to be found, I am hopeful that Nathan's pulmonologist , gastroenterologist, and CF team will provide us with options, whether it be g tube or something else.

We managed

Guess what?! We managed to get Nathan to eat a few bites of a Belgium waffle. Can't you see how much he ate?

Guess what else?! We also managed to get him to vomit a 1.5 cal pediasure. I don't think the microscopic bite of waffle was ever making its way down his esophagus. In my opinion the waffle attempt was so NOT worth it.

I have had enough of this....

Now while bath time happens, I am scrubbing the kitchen floor.

Saturday, November 3, 2012

30 Days of Thanks - Day 3 {My husband}

Jay works hard for our family.  Not only does he work a full time job, but he is always thinking of ways to make extra cash for our family on the side.  We struggle financially but with his constant brainstorming I feel less anxious about our situation.

Regardless, I am a worrier by nature and his playfulness helps to counteract my nerves.  He is a good father to our kids and for that I love him even more.

He makes a mean meatloaf and can solve the rubix cube faster than anyone I know!

Friday, November 2, 2012

30 Days of Thanks: Day 2 {Our children}

This goes without saying but Nathan and Teagan are my world. I am so very thankful to have been blessed with two beautiful, funny, currently healthy children.

The name Nathan means gift from God, and both kids are exactly that - gifts from God.

The innocence of children, especially during difficult times, brings perspective and joy into my life.

Although I had always wanted more than two kids growing up, I am now at peace with our current family.  Two personalities couldn't be any more different, life isn't boring at all with these kids.

30 Days of Thanks: Day 1 {Electricity}

Each day for the month of November, I will be writing about something I am thankful for, in no particular order.

DAY 1 - Electricity

New Jersey got slammed by Hurricane Sandy this past Monday and left many families without homes and/or power. We actually were in Virginia the days before and when the storm hit. We were originally supposed to return home to New Jersey Sunday evening but made the decision to remain with my brother in law and sister in law in Virginia based solely on electricity (not that we don't love them to the end of the world and back).

Based on Facebook communication, I was able to find out if my house and neighborhood regained electricity the following day after the storm hit. The majority of my friends and family were and still are without power but for this storm we were fortunate to regain power in less than 24 hours.

Why are we so dependent on electricity to the point where our entire world collapses when we don't have it. Everything becomes more difficult without electricity and we realize how much we take it for granted when we don't have it.

It brings back memories of Hurricane Irene. Normally I would just stock up on batteries, candles, and put on warm layers, but with Cystic Fibrosis - I want power!!!!!!

I suppose electricity is still a luxury even when it comes to this disease but it is something that makes life a million times easier as a caregiver.

Refrigerated medications and antibiotics - easier with electricity.

Nebulizers - we do have a battery operated Nebulizer but it takes much longer to Nebulizer medications. If we had no power we would just use the power inverter in the car like we did in Hurricane Irene and when we camped in Lake George.

Airway Clearance/CPT/vest - Prior to camping in Lake George, our power inverter was not strong enough to power the Vest and prior to the airway clearance vest we performed manual CPT. We still do manual CPT when Nathan's doctor orders it but the Vest makes life just a little bit easier as a caregiver. At least we can now power the Nebulizer and vest in the car with our more powerful inverter.

CFer's are strong individuals and don't know differently, but it does break my heart to see a fellow CF mom post photos of her in the car with her son staying warm in footy jams, running the neuroses off the car's battery and doing manual CPT in cramped space. I know, because we've been there before and I am sure we will be there again. Worst part, I can't even share my electricity with them because of the risk of our children contaminating each other.