wolfhirschhorn.org

As we all get to voting in the Halloweeen costume contest I thought I would write a quick update on how Arin is doing. Last week was a busy week for her with doctors and therapy apptointments. We had nutrition on Tue and they are going to change her tube feed schedule around and switch from 18hrs a day to 10 hrs a night with 3 bolus feeds during the day with the bottle being offered first. We are starting stage 2 baby foods mixed with cereal and she can eat as much of that as she wants. Has had pears and carrots. She liked the pears and not sure about the carrots but they did give her tummy a problem so no carrots for a while. Wednesday she had her EEG and a neurology appointment and she had occipital spikes during the EEG which the neurologist called seizure like and most likely a precursor to worse seizures and since we had this he does believe that the weird activity I have been noticing with her eyes is more than likely absence seizures so has put her on Keppra at 1.5ml 2 times a day. She seems to be tolerating that well. I knew that this could happen and even thought that it was happening  but it was still very hard to hear. Thursday brought the start of her occupational therapy which she is doing well so far on hold things for at least a few seconds. Friday was the big day and the day I had been waiting for….

Friday brought us into surgery so that the ENT good get a good look in her ears without her wiggling around and since she had a lot of wax in her ears he wanted to clean them out. He discovered that her ear drum was not moving due to a lot of thick yucky fluid behind the ears and was surprised that we had not had an ear infection yet. As she had just gotten done with 7 days of clindamycin due to cellulisitis around her G tube site it could have been infected but cleared up. He drained the fluid and put in tubes. The audiologist then came in and repeated her ABR and instead of moderate hearing loss in both ears they found that she only had mild hearing loss and believe that was due to some minor bleeding common when tubes are put in. So at the 4 week post op check they will do a couple tests to check and don’t believe that we will need hearing aids after all! Then in the recovery room Arin’s G tube button proceded to come out and we had to have GI come put a new one in.  Luckily it happened while we were in the hospital as the balloon was rupured and they think it would have happened soon. After we got home that afternoon we discovered that Arin could hear as when the telephone rang it scared her and she jumped. So exciting!!!!

It is hard to believe that she is 7 months old already. She is currently weighing in at 11lbs 7 oz and wearing 0-3 month clothes. She is a very happy and mild mannered baby and if not for the WHS and all the medical complications (20 different diagnoses) she would be my easiest child out of the 3.

These are Arin’s six month pictures and the first official professional pictures taken.