Newsletter Archive

The Very First Newsletter, November 1994

The Sophie Newsletter

Sophie at one month

Sophie at one month

 

photo (53)

Sophie Halloween 1994, 10 months

(Sophie is 10 months old!)

So many of you have been following Sophie’s progress, and we feel very blessed for all of the love and support you have given us through the months.  I hope you will forgive us for the form letter.  Some news is old, some is new, but this way we can get information to everyone with an updated photo.

Sophie had surgery July 20th for her club feet at Rush-Pres. St. Lukes hospital in Chicago.  This is the same hospital she stayed at in the beginning, and the same Othopeadic doctor, Dr. Kuo, performed the surgery.  It was a tough 2 days, (the first night Sophie and I didn’t get any sleep,) but Sophie is such a trooper.  By the end of the second day she was almost her old self.  The most difficult part was being unable to pick her up to comfort her — she had to have her feet raised and not moved for the 2 days.  She was put in casts immediately.  She also had 2 pins, one in each foot.  As usual, the hospital staff was wonderful (we can’t say enough about Rush- they have been so supportive!)  Sophie was visited by all of the Physical Therapists that had met her during her original stay. (I guess she made quite an impression!)

Sophie’s casts came off and the pins removed August 30th, and she will wear braces for 6 months.  Dr. Kuo feels that this should be all that is needed.  We are celebrating one large milestone behind us!

Sophie had a follow-up appointment with her Cardiac doctor (as you may recall, she had a small hole in her heart at birth-typical for preemies and usually closes by 6 months.)  One of our better doctor appointments — the hole appears to have healed and no further appointments are needed!!

While she was having foot surgery, her Neurologist, Dr. Heydemann, requested a muscle biopsy to be done.  This procedure requires a small piece of large muscle tissue (in Sophie’s case, from her left bicep,) that is then tested for muscle diseases.  Sophie is still displaying some troubling signs regarding her muscle control.  For example, she turns her arms backwards frequently and is still not grasping large or small objects.  She is still described as hypotonic, meaning “loose muscle tone.”  she has a difficult time maintaining good posture and tires easily.  Fortunately the results from the tests have shown that she is not a part of the muscle disease group including the Muscular Dystrophies.

Unfortunately, at her follow-up appointment it has been discovered she is feeling little if any pain.  Dr. Heydemann and his intern, along with the doctors at Rush are currently researching and working on a testing plan to try to figure out our “Mystery Gal.”  She is not fitting any of the patterns, though they are currently working on eliminating the Autonomic Neuropathies.  In September  Dr. Heydemann scheduled an EMG-NCV to be done, along with an eye-drop test for neuropathies.  The EMG-NCV test showed some response to muscle conduction, but little to none of sensory conductivity as we suspected.  The eye drop test was to rule out neuropathies and Sophie failed that test.  She was still exhibiting conflicting information so the doctor ordered a nerve biopsy to be done.  Sophie once again went into surgery with Dr. Kuo on October 19th.  Fortunately this was just a day surgery and she came home that afternoon.  She had a soft cast on that foot for about 2 weeks, and is now just in her braces.  Because she isn’t fitting any of the profiles, the doctors determined that the biopsy would be sent to the Mayo Clinic for evaluation.  It will take a minimum of 4 weeks for results, so we are now waiting for these.  We guess time should give us an answer soon.  If Mayo can’t find an answer, Sophie may be famous!

The good news is she continues to progress in her motor skills and strength.  On Rick’s birthday, October 31, she rolled over on her own both ways.  Her therapist got to see her do it on the following Thursday.  We are thrilled!  These small milestones in development are reasons to celebrate in our home!

Besides her Neurologist,  Sophie is followed by a Physical Therapist.  Diane has seen Sophie from the beginning, and helped us get Sophie to eat, use her arms better, and work on her trunk control.  She has been a wonderful friend to us, helping us through hospital procedures (she is at Rush) and getting answers.  She and we are excited to see how Sophie will progress in the weeks ahead now that the casts are off!

My old office asked me to help out for a short stint this Fall.  Sophie’s babysitter and neighbor, Shauna was able to help us out.  Shauna is so great with Sophie, and Sophie loves her!  Unfortunately we will be losing Shauna in February when she leaves for the Army for nursing.  Shauna has been wonderful and understanding regarding Sophie and her “uniqueness.”  She will be greatly missed by all of us and will make a great nurse!

We’ll try to keep you posted as Sophie progresses — feel free to keep calling us or family if you’re wondering!

Other News at the Prunty House…

Riley (our dog) handled the new arrival pretty well.  Except for a chewed-on chair, he was great– he used to  lie next to Sophie in the family room as her protector, though he headed for the door if she was yelling!  Unfortunately, our little dog died on October 29th.  He had chewed off the skin of a tennis ball, and though we thought we had gotten all the pieces, he had swallowed a large chunk.  This was devastating to all of us.  Riley helped me through some very tough times when I was on bed rest last December, and he was such a great friend to Rick and I.  We will miss him terribly, and had hoped that he and Sophie would be fast friends.  He was only 2 and one half years old, so it was a big shock.  We are currently looking into rescuing another Pembroke Welsh Corgi (same as Riley.)  Though Riley cannot be replaced in our hearts, we miss the sounds of a dog in the house.photo (62)

The cats pretty much ignore Sophie, but love all the new areas (like changing tables and the infant carrier) to lie on.  Sophie has learned to live with animal hair!

Rick is enjoying his new role and office at Heritage Capital in Itasca.  Together Rick and I work on his financial planning accounts from home.  I guess you could say we’re both working 2 jobs these days!  ( If you are a client, be nice to me if you find typos — I did it!)

And me– we decided that I should stay home to be with Sophie– it was a very hard decision because I had finally found a job I truly loved.  The office was extremely supportive of my decision. Both Rick and I feel very lucky to be able to make this choice.  We both feel Sophie’s progress has been greater since I can pay so much attention to her.  Overall, it’s best for everyone because with all of Sophie’s doctor appointments I couldn’t give anyone 100% — and that would make me crazy!

Finally, let me again thank you all for your love and support.  I am truly amazed at all the things people have done for us — from phone calls, to prayers, to gifts and time.  We feel so incredibly lucky to have you as friends and family.  Sophie couldn’t ask for a better family to belong to, and the depth of love and support from friends should carry her and us through any tough times ahead.

We hope this letter finds you happy and healthy.  You are in our thoughts.  If we haven’t spoken with you recently, I hope this letter will let you know how special we think you are.

All Our Love,

 

                                    Jody, Rick, and Sophie

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