Thursday, February 18, 2010

New Stuff, yo

As usual, I suck at blogging, but I am going to attempt to once again, start this up!

Asher is pretty much the same. We have discontinued early intervention services and sought private feeding therapy. The good news is that he is drinking about 16 oz of fluid a day. This is up from his 8-10! Cold, carbonated and sour is the key for him! Lemonade with a splash of club soda!

We went to the GI today because Asher has been vomitting again. In HUGE way more than went in! There are also other stange things going on, like
Pica. Note the irony that this entry in kidshealth was written in Dec of 2007. Ha!

Anyway, in addition to the above, Asher has lost almost 2 pounds lately (since November). I don't even want to think about how far off that blasted growth chart he is at this point! He is also saying things like "Food hurt me" or "food scare me." Or, weirder yet, "nose broke." He is refusing most meals at this point. He seems very angry when we try to have regular meal times. He says, "I don't like lunch/dinner/eat/etc." Sometimes this attitude continues after the meal and he says "I don't like ____(insert person that he loves)." Very sad! He has been coughing at night.

He doesn't want to sit in his booster chair at meal times anymore and cries if you place him in it. He wants to sit right next me, on our bench style kitchen set, and is very antsy and irritable. Just about the only time he is eating is when he is not paying attention to the task. Foods he is currently accepting are all unhealthy-things like potatoe chips or chocolate, and even those in very small amounts.

He has been noting that things like bathing or lotion application hurt. He is also claiming to itch frequently.

Our new feeding therapist, Cheri, noted that his coloring has been very pale. We really like Cheri and she has been a big advocate for Asher, especially with assisting us in getting further assessment completed medically.

Now for the GI update today. GI does not really believe Asher's issues are GI-related. He is taking Asher off of Periactin, the appetite stimulant. He is keeping him on Prevacid. He is starting him on Reglan to hopefully assist with gastric emptying as this is something that I asked about today...he does not seem to think this is the true issue, but he wants to try it. He gave me all of the risks of Reglan and assurred me that the Tardive Dyskenasia disorder is most common in older adult females. Eek, though, I would be totally scared if Asher had that reaction. We are suppose to watch for a head locked in place, as this is the first sign of it. If that happens, we are to give him Bendadryl and take him to the nearest urgent care or ER. Pray that doesn't happen!

GI also wants lead testing and a CBC ran. He is especially concerned about the lead risk since Pica has presented. He showed me Asher's
Prealbumin levels from September when we did his endoscopy (his were 14). They are fall into the moderate risk catergory for malnutrition. We will see where those are at tomorrow at the blood test.

We see the GI again on March 12 for a follow up on the Reglan trial. He said that if this is not effective we will proceed with the process of getting Asher a
G-tube. This is something that I have believed that Asher has needed for a long, long time. It will take quite awhile for Asher to learn what it is to be full and that that is a good feeling. We have been told by many of Asher's professionals that he is functioning at an anorexic-level. He doesn't even know what it's like to be full.

On the ENT side of things, she has suggested a scope down Asher's nose and into his airway to look at his tonsils and adenoids to see if they are enlarged. Unfortunately, we are not able to get sedation for this procedure. She usually does this in the office. Asher would not tolerate such a procedure and I believe it would be quite traumatic for him. We are holding off on this for now, but it will probably be pursued in the future.

We appreciate your prayers and encouragment! Asher is so loved!

Saturday, September 26, 2009

So I'm negligent of this blog...


I realized that I have not updated this in forever after my dear, and incredibly witty friend Jessica started her own, much more awesome blog. (She should really be writing some snazzy article in Parents every month)! See the blogs I follow for hers-you won't be disappointed!

Asher has been all over the place this summer. For about 2 weeks, we had huge success with letting him watch Elmo while he ate. Then he figured out my ploy and began vomiting multiple times a day, most day of the week....that was a lot of fun for everyone.

We FINALLY got him into an ENT doc (VOSS-swallow study) and a GI specialist (for an endoscopy). Both of those doctors gave him their problems! Ha! The GI did put him on Prevacid to help with the vomiting. I asked, rather begged, for an appetite stimulant and he is now on Periactin (which is actually an antihistamine, but also serves as an appetite stimulant-often used in the treatment of anorexia nervosa).
We've battled a few infections this summer-yeast, UTI and ear. The UTI is likely a result of the low free liquid fluids combined with such a calorically dense, high fat/protein formula.

He is self-feeding again, which is a huge improvement, but I am just waiting for the ball to drop....most research says that Periactin works for a short time and then loses it effectiveness. In addition, he is still self-limiting his fluids. For instance, he had a whopping 3 oz of water yesterday! He is still on his prescription formula (Boost 1.5).

The biggest concern right now is increasing fluids. There is a huge concern with damage to the renal system when so little free liquid is consumed. We are trying to remain hopeful, but if he posts another loss, I will be more than ready for the tube!

Friday, June 26, 2009


Asher is still continuing to falter off of the chart. He makes progresses, only to take more steps backwards.

We are awaiting our pediatrician to make us an ENT referral. We are also going to try one more formula that has 2x's the amount of calories as Pediasure (Kid's Boost 1.5).

If these things do not improve the situation, we will be looking at supplemental feedings (a NG tube). Hopefully this would just be a temporary thing to expand A's stomach, get him properly hydrated and back on track.

The prospect of my child having a tube taped to his face is not comforting (or placing it, or him ripping it out, etc). However, constant dehydration, limited (or no) growth and mealtime tears are not my idea of fun either and I'm getting really, really worn out.

Wednesday, May 27, 2009

A major backslide

Annnnd....we're back to losing weight. :(

Asher lost about a pound over the last month. I went out of town for a few days and since I returned, he seems to have lost interest in eating/drinking. He is having a swallow study done on June 10 to see if he is indeed aspirating. Since he hasn't gotten up to the recommended daily intake of fluids (goal-27 oz, Asher is at about 14-16oz) with using the thickeners, we are questioning their overall effectiveness.

If Asher's swallow study is inconclusive, he is being referred to a gastro-intenologist for some GI track testing.

Asher's dietician has switched him from pediasure/boost to what's called Neocate. Neocate is another weight gain agent but its molecules are already broken up (it's similar to Alimentum baby formula, but for older children). The thought is that perhaps Asher's stomach is unable to digest food very rapidly and this is why he is not eating/drinking much. The Neocate is $300 a case, but thankfully, we have samples first. He has had it for the last 16 or so hours and has had (TMI! TMI! TMI!) about 4 instances of mucousy diarrhea. I guess I know it's moving through him!

Mealtimes have gotten rather stressful and are not fun for anyone. BIG SIGH!
24 hour Meal Schedule:
May 19, 2009

refused cereal, banana
4 oz pediasure

refused cheese pizza, sandwich
4 oz pedialite

2 bites meatloaf (turkey) with ketchup
2 bites applesauce
refused mashed potatoes, peas
4 oz pediasure

¼ C raisin-choc. chip mix
3 oz pediasure

Asher had approximately 5 oz flavored water today.

On a brighter note, check out his new haircut in the picture!

Tuesday, April 28, 2009


I thought I might upload some of Asher's menus. It's sort of fun to keep track of everything. I haven't been able to keep up with this as much as I would like to. We have all been pretty sick around here-blah! That doesn't help you gain weight! LOL

April 27, 2009

1/3 C apples and cinnamon oatmeal
2 bites toast (whole grain) with butter and apple butter
1 oz pediasure

refused applesauce
½ C Annie’s Organic shells and cheese
2 oz pediasure

1/3 C Orzo Chicken Risotto
1 Horizon Organic Yogurt Tube
2 oz pediasure

1 oz cheese
1 serving of Earth’s Best Organic Elmo crackers
1 serving of Earth’s Best Organic Letter of the day cookies
3 oz pediasure

Asher had 6 oz of flavored water today.

April 24, 2009

2/3 slice toast (whole grain wheat) with butter and fruit spread
¼ banana
1 oz pediasure

1 slice cheese pizza
¾ string cheese
6 oz pediasure

¼ C corn with butter
4 bites of turkey-pasta cheese soup bake
½ C applesauce
5 oz pediasure

¾ Earth’s Best Organic Cereal bar
1 Horizon Organic yogurt tube
½ fruit cup (peaches)
1 C turkey pasta cheese soup bake
3 oz pediasure

Asher had approximately 4 oz of water today.

April 22, 2009

1/3 C Earth’s Best Organic Whole Grain oatmeal mixed with full fat yogurt and peach juice
2 oz pediasure
1/3 slice whole grain wheat toast with butter and fruit spread

½ grilled cheese sandwich on whole grain bread
¼ C peas with butter
4 bites fruit cup
10 Earth’s Best Organic Letter Cookies
5.5 oz pediasure!!!

1/3 slice of strawberry bread made with whole wheat flour
2 oz pediasure
¾ C applesauce

¼ C pasta with red sauce, mozzarella
9 Earth’s Best Organic Letter Cookies
3 bites roll with butter
4 oz pediasure

Asher had approximately 3 oz of water (flavored) today.

What I've posted are all really good days. Over the last 3 days, his fluid intake is back down around 14-15 oz. :( Sigh.....

Friday, April 10, 2009

Things are looking up!

We met with early intervention this week and things are going a bit better. Asher is 2 percentiles up! Still not on the growth chart, but he is making headway. He had more fluid today than EVER before in his whole life (21 ounces). We just switched him to an even thicker, thickening agent. I'm not in love with the fact that his fluids are ALL preservative-laden, but I am glad that he is finally drinking!
Praise God!

Friday, March 20, 2009

New plan

As part of Asher's early intervention treatment plan, I must keep track of everything he eats and drinks. We are aiming at 1000 calories/day. This is much harder than it sounds! He typically gets 800-850 on a GOOD day. He is also required to have 5 mini meals a day, but he is simply not awake for all of these! We do get 4 in. He is not allowed to graze all day and this is hard for me because I always want to just feed him whenever! He only gets Pediasure or water now (in sippy cups with stoppers-also new for us) and just yesterday they started having me add this stuff called, 'Thick It" to all of his drinks. The feeding specialist thinks that he may have a swallow issue (slight aspiration) and is hoping that by thickening all of his drinks, he will feel safer to drink more. So far, it's not going well. It's almost 2:30 and I don't think he's even had a full ouce of fluid. :::::Sigh::::::