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Small Success!

Stanton has had a touch of pnuemonia this past week and weekend.  He's on tons of steriods and breathing treatments.  However, for the first time in a year, we were able to manage this at home!  The same symptoms, just three months ago, would have landed us in the hospital.  But, as I said in my last post, he now will take his medications and drink fluids.  This is such great progress for our family.

 

 

We go to Tulane to see the pulmonologist on Thursday.  I have lots of questions for him! Currently, Stanton takes Claritin every morning and Singular every night; Pulmicort every morning and Xoponex every night.  That just seems like a lot of different medications to help control his asthma.  My other question is about how to make his upper respiratory cilia stronger and more responsive.  His last scope at the Cincinnati Children's Hospital showed that during an "asthma flare" or illness his cilia freeze.  The cilia are the tiny hairs in our respiratory tract that help move mucus.  Since Stanton's freeze, his body has a difficult time fighting something like a simple cold.  

 

 

A friend of mine posted the verse below on facebook this week.  It was just what I needed to hear in the midst of my questioning God about why my child continues to struggle with his health.  May it speak to you as well this week

 

"No eye has seen, no ear has heard, no mind has conceived what God

has prepared for those who love Him." 1 Cor 2:9

 

same ol', same ol'

This pretty much describes our summer:

 

And this pretty much sums up the start of Fall:

 

I haven't blogged in a while because there really hasn't been much to report.  We continue to face the same daily struggles and battles we have all the time.  Stanton still has good and bad days; still isn't much of an eater; still sees more doctors than any four year old should; still has some sort of therapy practically everyday.

 

We are trying hard to have some "normal" kid things for him as well.  I really don't like the fact that his chronic illness and low immune system keep him from participating in school and many other things.  I know Stanton craves social time away from me.  So, in August he started Karate.  He loves it so far, although we have missed more than we've been thanks to asthma.  After Labor Day, we enrolled Stanton in a Sunday evening church program.  He's only made it once, but seemed to enjoy it.  I really hope his health will improve so we can participate in these fun activities on a more regular basis. 

 

We have made progress in getting Stanton to take his medications without throwing up (well, most days that is, as today he did throw up a claritin).  He also seems to know understand the importance of staying hydrated, and will now drink something even when not feeling well.  It does take lots of coaxing...but....it's working!  Both of these things may seem small, however, they have kept him out of the hospital for the last four months!  So, in our world....that's HUGE!

Maybe Monday?

Well the appetite stimulant we started Stanton on worked well for about ten days, then stopped.  So, we took him off of it for a week and started it back this week.  I’m disappointed to say I haven’t noticed a difference.  So, for the last two and half weeks, give or take, Stanton is only taking a bite of this or that and saying he’s full or not hungry.  It’s exhausting to spend my whole day revolved around bribing, pleading and buying anything your non-eating child says he might like to try. 

 

Crystal Light has come out with a line of “mocktails.”  We bought and tried the Mojito, Appletini and Margarita.  They are all delicious and really taste like a cocktail!  Since I’m breastfeeding a baby, it’s been a nice little treat for me.  We had the Margarita flavor in honor of Cinco de Mayo.  I pulled out pretty glasses and gave one to Stanton.  He said “what’s this?”  I told him “a margarita for Happy Mexico day.”  He drank it and loved it!  So now, he randomly asks for a “Margatita.”  It’s pretty funny to see an almost four year old trying to ask a margarita and has turned a few heads!  Time magazine should consider that for a cover (just kidding of course!)

Last week Stanton had a cold and asthma issues.  When he’s sick he always shuts down orally, so I wasn’t surprised that he didn’t really eat.  I was pleasantly surprised that he continued to drink!  Usually that stops too and we end up in the hospital to treat his dehydration.  So, I guess we did take a small step in the right direction with this last illness! 

On Monday we have an appointment with a gastroenterologist and feeding team at the New Orleans Children’s Hospital.  This was encouraged by our team in Cincinnati as they felt we really needed a local GI team.  If Stanton ends up needing to be treated while in the hospital sick, it’s easier to coordinate in New Orleans then trying to fly to Cincinnati last minute.  Cincinnati also said that if Stanton ends up needing a feeding tube, it’s always easier on the family to have those follow up visits locally as well.  I’m curious to meet the team and hear their advice and recommendations for our journey.  We’ve met so many doctors and specialists, it’s hard to be excited about it.  But, I do know that one day, we’ll walk in to a doctor’s office somewhere and they will just know exactly what to do.  Maybe that will be Monday…

Appetite

We started Stanton on an appetite stimulant two weeks ago.  Everything I found on line indicated we should see results within the first two days.  We really didn’t notice a significant difference in his appetite right away. One side effect is drowsiness and we definitely noticed that the first day.  Stanton seemed tired and lethargic in the mornings and a bit more clumsy, but we thought that could also be from lack of nutrition.  I exhaust my whole day trying to get him to take a bite of something, a drink of something or contemplating a way to bribe him into eating.  I know he’s hungry and doesn’t feel great.  This comes out in strange ways.  He is an emotional basket case and his behavior has become a bit unpredictable.  His patience level has dramatically decreased and he spends a lot of time extremely frustrated when things don’t work out they way he’d like.  It’s a fine line for me in parenting.  I know he has a good reason to act in such a reactive way.  I mean, when I’m hungry I’m a big grouch myself.  However, that type of behavior is really unacceptable.  So, I’m trying to continue to mold his actions and help him understand that food fuels his body and helps him not feel bad.

Stanton too tired to play outside

We have a great book about the body from Usborne books, See Inside Your Body.  One chapter is full of information about what happens to the food inside your body.  Stanton really enjoys lifting the flaps and talking about all the processes from swallowing, to digestion.  After he licks something or takes one bite he’ll say “Now I have much energy!”  Or sometimes he’ll ask, “is that food in my intestines now?”

After about six days on the appetite stimulant, we finally noticed an increase in his hunger level!  So, this past week has been great.  He is now drinking 5 – 6 oz of chocolate milk morning, noon and night.  Stanton’s finally picked out a sippy cup  (Who knew that could be so stressful) and is taking his chocolate milk in the Playtex insulated sippy cups with the hard plastic lids.  This is a HUGE relief for me.  We are hiding his medications and a two scopes of Elecare (his medical formula) in the chocolate milk.  So at least he’s getting some vitamins and nutrition, although it’s still not as much as his usual intake of Elecare.

Stanton is now consistently eating beef hotdogs, peanut butter on a spoon, McDonald’s French fries with ketchup, Chick-fil-a nuggets with Polynesian sauce and Kraft macaroni and cheese in the microwavable cups.  This is an exciting list!  We hope to see it grow as the weeks progress!

Slow and Steady

I spoke with the team in Cincinnati and they still don’t have the results of his cilia lab work. We are also still waiting to hear about our referral to the GI team in New Orleans. Locally we have been asked to participate in a newly developing asthma clinic with Memorial Hospital. I said sure and set up our first appointment in two weeks. 

Stanton is slowly beginning to eat.  It is a slow, arduous process….but with tons of encouragement, he is sustaining his weight finally!  Stanton continues to refuse his Elecare, no matter the container.  He is, however, now drinking about 5 ounces of chocolate milk in the morning and at night.  So, I’m hiding a scoop of Elecare and his medicines in the chocolate milk.  At least he’s getting a little! 

In speech therapy our therapist is working diligently at food chaining french fries. 

This has gone surprisingly well.  We started with fast food fries, then introduced varieties of fries, adding a new one each week.   

  

The plan is to progress to steak fries, then a potato and eventually mashed potatoes, etc. 

At home we’ve taken this concept with hot dogs and Stanton is now eating a sliced hot dog and a half of a corn-dog!  This is huge for a child who used to never put anything in his mouth!  We are thrilled with his brave spirit and pray this slow, but steady progress will continue.