Ophthalmology and A New Year

Ophthalmology and A New Year

Happy New Year to you all!!  We closed out 2014 with an appointment on December 31st with Elizabeth's Ophthalmologist, Dr. Dawn Herzig.  We really, really, really like her and would highly recommend her to anyone looking for a Pediatric Ophthalmologist.  

The appointment went well.  Dr. Herzig and I discussed the various developments from Elizabeth's multitude of visits.  It was quite an extensive update, because she last saw Dr. Herzig at the beginning of September, which was before things became so intense.  We particularly discussed the findings of her brain MRI and the diagnosis of CVI (Cerebral Visual Impairment).  As her Ophthalmologist, Dr. Herzig was primarily interested in updates that related to her vision.  However, she also had some insight into the suggestion of the Genetics physician that Elizabeth has symptoms and features that suggest a Connective Tissue Disorder.  She explained how there are many syndromes and disorders in that category that can cause issues with the eyes and vision.  We also discussed the upcoming appointment with Dr. Christine Roman-Lantzy, a CVI specialist in Pittsburgh.  

Dr. Herzig checked Elizabeth's vision and her eyes. She noted that Elizabeth's optic nerves have more "cupping" than found in normal optic nerves, and the cupping is not related to glaucoma.  This finding is likely related to whatever syndrome or disorder has caused her other symptoms, brain abnormalities, etc. Dr. Herzig also noted that Elizabeth's eyes were crossing more than was previously observed when her glasses were off.  This actually is a sign that the glasses are doing their job.  We don't see her eyes cross, or notice her lazy eye, when she wears her glasses.  Dr. Herzig also noted, and confirmed our opinion, that her visual tracking and focusing were much better than her previous visit. These are all great signs, and since the glasses are working so well the prescription will be kept the same for now.  

We go back to see Dr. Herzig at the beginning of April for a follow-up appointment.  It is important for Elizabeth to follow up often.  This way we can keep track of changes in her eyes, optic nerves, etc., and we can also determine if the prescription in her glasses is accurate. 

We had made plans to take Celtan to play with his cousins at Jump Zone in Allison Park after the appointment.  Since Jason and I were both off, Jason and Celtan came to the eye appointment with us.  I was really looking forward to taking Celtan there, because I have heard how much fun it is, and I was looking forward to him doing something that was really fun. I also had invited my friend, Mere, to meet us and bring her son.  She was able to come, and it was great to see her!  This is the same Mere that delivered Elizabeth.  Celtan had a great time playing with his cousins and Levi (Mere's son).  It was so exciting and really awesome to see him having so much fun.  I even went down a few of the slides with him.  We got some great pictures and videos, and the excitement in his face is just priceless. 

 It was also my birthday, and it was an awesome present to see him having so much fun.  I feel badly, because I feel like sometimes we don't get to do too many fun things with Celtan.  We either don't have the extra funds, or we don't have the time with everything that is going on between Elizabeth's therapy and doctor appointments.  He never complains, and we try to keep him involved as much as possible, but he is only four.  He often tries to help her during therapy, and he tries to get her to play with him all of the time.  Celtan really loves Elizabeth, and he is really great with her.   I just feel badly, because I feel that sometimes this is just as hard on him as it is on the rest of us.  

We went to my parent's house later that day, and my mom made a delicious spaghetti dinner for my birthday.  It was delicious, and then we came home, put our pajamas on, and spent the rest of the evening having a pajama party.  I didn't even make it until midnight. I was asleep by 9 p.m. It was a very relaxing and wonderful day.  I spent time with the people in my life that mean the most to me, and I really could not have asked for a better day. 

As you may recall from an earlier post, Elizabeth and Celtan both came down with a virus the week of Christmas.  Celtan was feeling much better by the third day, but Elizabeth's "virus" was still lingering.  She developed a cough that did not seem to be getting better despite using her regimen of inhalers.  On Thursday (New Year's Day), she woke up from a nap and had a rash on her forehead.  The rash that is always across her cheeks was also worse, however it does tend to get worse when she is sick.  I called on Friday, January 2nd and made her an appointment to see the doctor.  I just wanted them to recheck her cough, and I also wanted them to make sure that she didn't pick up something else.  As for the rash, she gets random rashes a lot.  So, I just assumed that maybe her clothes were washed in the wrong detergent, or that she was having a reaction to something.  

At the doctor, they checked her ears, listened to her lungs, and everything looked and sounded fine.  Then, the doctor looked into her throat.  She saw that it had the classic white bumps and was very red.  So, they swabbed her throat.  Also, the rash that started on her head on Thursday had now spread all over her face, neck, and body.  It was just a few minutes later that her rapid Strep test came back positive.  The doctor said that her rash was called Scarlatina, and it is a rash that can happen when you have strep throat.  So, they put her on an antibiotic.

As we bring in the new year with a new illness, I am thankful for doctors, antibiotics, and the excellent medical care that we have access to for Elizabeth. I am also thankful for friends, as I have spent the past week visiting with friends that are near and dear to my heart that I don't get to see that often.  I had a great time visiting with Lisa, Julie, Krista and Mere this week.  I also am thankful for my family.  My cousins, aunts, uncles, grandparents, parents, and sisters, my Hackwelder family, and other extended family members are such a blessing in our lives.  Their love, laughter, support, and encouragement mean so much to us.  I am also thankful to all of you who continue to read, pray, stay in touch, send cards, and let us know that you are here for us.  No matter what the new year brings us, we will continue to make the best of the hand that we are dealt.  We thank all of you for making it possible for us to continue on doing that.  

We have several important appointments and new departments coming up in the next few weeks. So, there will be more updates to the blog coming up.  January 9th will bring us to Hematology, a post-op follow up with Elizabeth's ENT and the Cleft Team, and an appointment with Rheumatology.  On January 13th, we see a CVI specialist and have follow-up appointments with Neurology and her Diagnostic Referral Group doctor.  Then, on January 14th we see Gastroenterology and Immunology.  So, hopefully these new departments can help shed light or put together the pieces of Elizabeth's symptoms and testing.  We should also have an answer from the insurance company soon regarding our first appeal on Elizabeth's genetic testing. If they denied it, then we will keep appealing.  If they approved it, then they can start looking at her DNA, which should help us to get some more specific answers.  

Sometimes these days of multiple appointments are quite long and tedious, but it helps us to schedule in that way.  It not only saves us trips, but it also saves me from taking so many days off from work.  At this point, every day that I take is unpaid, and so as this journey continues it continues to impact us financially.  We do what we can and try to make ends meet, because Elizabeth is our focus.  However, my paycheck at Christmas was about half of what it usually is because of the days that I took during her surgery. However, it is what it is. We make it work.  I'm so blessed that we have secret and known angels all around us who freely give to help us out whether it is food, cards, prayers, donations, etc.  We cannot thank you enough for your love and support as we continue to do what we need to do to get the best help and answers for Elizabeth. If this is not the definition of being blessed, then I have no clue what it is. We are certainly blessed by having all of you in our lives. 

We wish you all the best in the new year and hope that 2015 will be your best year yet.  We hope that it is full of love, laughter, blessings and good health for all of you.  Thank you for following us on this journey. Thank you for being angels among us.  Thank you a million times over for everything that you have done and continue to do for our sweet Elizabeth.  We LOVE you!!