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!

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