Busy Days of Summer

Sorry for the huge gap in posts!  We were on Ocean City for the 4th and super busy since we got back.  Isla and Siena had a great time with their cousins at the beach.  Siena pulled a first for us and ate a sand crab the first day there!  She grabbed it out of Devy’s hand and put it in her mouth faster than Papa could stop her.  By the time he was able to unclench her mouth the sand crab was a flattened shell.  Oh well, at least she got some extra protein for the day !

We saw Elizabeth, Siena’s PT on the 11th, this will be her last visit with Siena for about a month because she is having a baby. 🙂  We worked on sit to stand on the sofa cushion and standing to play at love seat.  Some homework she gave us is to have Siena climb the top steps (which scares me to death!), climb over bigger things like the sofa cushion and to transfer and cruise while standing to different objects (like play table to sofa, etc).  Siena also started with a special instructor for speech and communication last week through Early Intervention.  She will visit with Siena once a month for now.  She gave us a few pointers on how to work with Siena’s communication skills and showed us some signing to do with her.  The main ones were “please”, “more” and “hungry”.

We also saw Dr. Gottleib last Friday.  He was very happy to see Siena so alert and breathing so much better since her surgery.  She weighed 14lb 11oz, which is more than she weighed when she was in to see him the beginning of June, so she has gained most of the weight back that she had lost.  She also grew almost an inch!  She is now 26 1/4 inches.  Since we have not been seeing any seizure activity since her surgery, we will keep the medication the same dosage for now and do another EEG in a few months. Her blood levels for the Keppra (seizure medication) were at a therapeutic level before the surgery and Dr. Gottlieb was happy with that.  I told him that Siena was very adverse to the medicine, so he suggested putting it in about 2-3 oz of milk or juice.  I did that this morning and she drank it right down 🙂 We will see Dr. Gottlieb in three months – after sleep study (September) and Endo appointment in October.

Big news is that she started on the Carnitine supplement last night!  She will get 1.5 ml twice a day unless we see that it is keeping her awake at night and then we can give her the whole dosage at one time or  just make sure she has it several hours before bedtime.  She took it wonderfully for me this morning, so maybe it tastes better than the seizure medication? Now we will just wait and see if it makes a difference in her sleepiness at mealtime.

Other news is that Medical Assistance application has been submitted and all pertinent paperwork faxed over, so we will keep our fingers crossed and anxiously await for approval!  Also, we have decided to hold a walk in October and have it be for Siena’s Special Needs Trust that is being set up.  We were originally thinking of having it be part of PWSA On the Move Campaign, but have realized we do not have enough of time to plan such a big event right now.  Plus a lot of people have asked about donating to Siena, so we figured this would be a good way for that to happen.  The walk will be Sunday, October 9th – location is still not final, but we are hoping on the Rails to Trails in Cornwall area.  Let us know if you are interested in participating… xoxo



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