Monday, December 17, 2012

Santa Claus is coming...to town

Santa toured our neighborhood courtesy of the township volunteer fire department. I was pumping the kids up for the visit all day and Teagan excitedly declared "Santa Claus is coming......" and after a short delay finished "to town".













Sunday, December 16, 2012

Tuesday, December 11, 2012

2nd visit to Feeding and Swallowing Center

This afternoon is our follow up appointment at the Feeding and Swallowing Clinic.

The only changes we made since Nathan's first visit were daily miralax and 30 mg of Prevacid first thing in the morning (rather than 15 mg at bedtime).

His stools are still inconsistent so I may have to tweak the miralax dose.

After visiting the pulmonologist last Wednesday, Nathan started taking 2mg periactin twice daily. Actually he had only been getting one of those doses because I kept forgetting the 2nd. It had been making him so tired and out of it that I decided to only give him the bedtime dose until speaking with the specialists.

I am thinking I need to make a dry erase board with his medications listed under the glass because my mind is overwhelmed and our kitchen "medicine" cabinets are in a state of chaos.

Not only do we have to drive to Paterson today, but we have to go again first thing in the morning to have his feet measured for orthotics.

I really don't want to be pitying myself but I am kinda feeling like I will never have time to hang our Christmas lights, or find our box of ornaments or stockings in our cluttered basement. And even before decorating our house and tree for Christmas, I have clients that need their photos - I am behind 5 sessions.

And the dollhouse that needs to be assembled (probably Christmas Eve).

Sunday, December 9, 2012

Thanksgiving in Virginia

A bit overdue...our Thanksgiving in Virginia with my husband's family:












Sunday, December 2, 2012

December already

I feel like I say this every year but really, December already?

With an Autumn packed full of newborns and family photo shoots, we've been hustling through the weeks and approaching the Holidays (Thanksgiving and Christmas) at full speed.

I am so glad we slowed down for a week and enjoyed some time with Jay's family in Virginia and Florida this past week.

Driving to Florida, even with stopping in Virginia, is way overrated. I think without kids it would be no problem but with one little girl who cries in the car unless someone is holding her hand or unless she is asleep, it is torture.

Disney this time of year made the torturous road trip worth it though. It really was a magical visit that both kids enjoyed. I have added photos to my personal Facebook but I will share some here when we get back home. You can see the excitement in their eyes and smiles.

We are currently a few hours from home, I wish we could just time warp and be there already. I can't wait to snuggle our cats, do laundry, sleep in my bed with my pillow, and get back into our routine.

The next few weeks are going to fly by and soon it will be Christmas. I have a handful of photo sessions to fit in before Christmas and a handful of completed sessions to get in the mail.

And throw in a CF check up and a visit or two to the feeding and swallowing center.

My brain can't handle it all. Looks like I will be spending some quality time with my planner.

Nathan's medication and treatment routine got out of whack while we were on vacation. We forgot his Zyrtec, sometimes didn't wait a full 30 minutes after giving Prevacid to feed him, and sometimes forgot his bactrim. I feel guilt but can't wait to sterilize everything and get back on track.

And as for Christmas preparation, I don't feel unprepared. We will probably go pick our tree next weekend and then after we decorate it we can relax and enjoy the twinkling lights. We are not going overboard with presents this year since our trip to Disney was a huge part of their Christmas presents.

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!!