Whew! It has been a long week!

Sorry for the long time between posts… since the last time I wrote, we: came home from duPont, had “surgery” on Jamie’s toe, went to Newtown Square for Siena’s first Endocrinology appointment, had four photo sessions, a birthday party for Tavan (Happy #6 Tater!), Father’s Day, Siena’s Early Intervention Annual Evaluation (say that three times fast!), a 15-month well-check AND a 4-year old well-check. wow, just trying to remember all that wore me out!

In all seriousness, Siena is recovering from surgery beautifully…well, except for her breath, she could give poor Ray-Ray (the dog) a run for his money!  She didn’t drink much for us last week until around Friday.  She is eating really well, so hopefully she will start to gain the weight back that she lost.  She was down to 14lbs at her well-check on Monday.  The swelling is getting better and snoring is SO much better!

The Endocrinologist had great things to say – she is on board with getting Siena on Growth Hormone.  We must wait though and do another Sleep Study in three months.  We are debating whether to this at Hershey again or to keep the momentum going with duPont.  We will then see Endo again in four months and make the decision on the GH then.  I have emailed Dr. Miller (the Endo in Florida specializing in PWS) with this game plan and she is thrilled.  Hopefully the Sleep Study will give us the results we are looking for.

Siena’s Early Intervention Annual Evaluation went well.  We had our Physical Therapist (Liz), Occupational Therapist (Deb), EI Support Coordinator (Mandy), and an intern from EI here to do the evaluation on Monday.  Based on Deb & Liz’s evals Siena still qualifies for services. Siena is actually doing pretty well from the Cognitive, Communication, Social & Emotional Development, averaging at around a 13-month old.  Her Physical & Adaptive Development are a bit lower measuring her at around a 9 or 10-month old.  During this meeting we discussed Speech Therapy/Instruction for Siena and actually received a call from someone to set this up already.  Siena will probably see someone for speech once a month for now.  We currently flip flop PT and OT so that Siena is seeing someone at every week.  We were encouraged to apply for Medical Assistance and were told because of Siena’s PWS we will almost definitely be approved.  I started the application process today.

A few hours after the EI Team left, Isla, Siena and I headed over to their well-checks.   Mommy learned a lesson here… NEVER take two children for their well-checks at the same time by YOURSELF!  ESPECIALLY when both required getting vaccinations.  Both girls were healthy – Siena had lost weight, but doctor was not too worried since she just had surgery.  She would like her to have a weight check in 4-6 weeks, which we can do when we see Dr. Gottlieb in July.  Siena had two shots, Isla had FOUR.  This was the first time Isla has ever freaked out at the doctor’s office.  I literally had to hold her arms and legs down so the nurse could give her the shots… one in each arm and one in each leg.  She was screaming, ” Mommy, don’t let them do it!”… “I hate shots!”  Pretty sure it was the first time I ever heard Isla say “hate”… but I had to agree with her, I hated it to.   Once we got out of the building and were in the car she calmed down, and that night at dinner informed me she never wants shots again and when she turns FIVE she will not be getting FIVE shots.

Tuesday night rolls around and we get a call from the pediatrician.  Turns out since we had had two doctors for Isla, previous to the current pediatrician, her records had been a bit confusing and Isla had her chicken pox booster and MMR booster when she was TWO at her former doctors office.  This is not supposed to be given until age 4 or 5 which is why she was given it on Monday – they didn’t realize she had already had it until we had left and they organized her charts better I guess. The Pediatrician is not sure why she was given this at age two, but said the school might have made her get it again for kindergarten anyway, so now she will be good to go and shouldn’t need anymore shots until she is ten.  I told Isla and she adamantly opposed, “I don’t never, EVER want anymore shots, Mommy!”

Think that pretty much sums it – thanks for all of your thoughts and prayers for Siena during her surgery.  The love was definitely felt and appreciated. xoxo


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