I HEART SOPHIA

Hi all.  I just wanted to quickly post that Sophia has been feeling much better the past couple of days.  She is still needing a few breathing treatments daily, but overall she is on the mend.  We had a great holiday yesterday.  In the morning we went to the city market with my parents and scored lots of fresh produce.  Sophia loves to go because she “samples” all the berries the farmers are selling that are near her grasp.  Later we spent the evening with Michael’s family eating dinner and letting off our own fireworks.  Sophia was some what scare of the fireworks that made loud noises.  Then we came home and watched “big” fireworks on television.  She said she might like to go see “big” fireworks when she gets older.  Michael and I hope everybody had a safe and happy holiday.

So Sophia symptoms seemed to be worsening yesterday and I made her an appointment for the pediatrician for this morning thinking I could always cancel it if she was feeling better.  After a good nights rest her cough seemed a little deeper and thicker, she still had a low temp, no appetite, a little bit discolored snot and I could tell she just was not on the mend yet so I decided to keep the appointment.  Good thing, she has a pneumonia (not a very severe one).  Her sats were in the mid 70’s and she has crackeling sounds coming from her lower left lung area.  He prescribed Augmentin (an antibiotic) and told me to continue giving her nebulizer treatments for the cough, Benadryl and loratadine for the snot, and tylenol for the fever.  We also agreed it was a good idea to put her back on lasiks once a day (which we had already started doing yesterday). He said to try to get her to rest and drink as much water as possible.  I am believe she will respond positively to this plan and hopefully will be much better in time for the 4th of July.  In the meantime we will be doing lots of readying, watching cartoons and playing games with daddy.

Sophia has been working on getting a cold/cough the past couple of days.  Now she officially has one.  I have been giving her breathing treatments for the cough and some over the counter meds for the snot.  So far this method is working.  Sophia is  an over all much healthier kid lately and I am sure that this summer cold will only be a temporary set back.  She is getting plenty of rest and fluids (not really eating though) and hopefully she will be her old self in a couple of days.

We’ve had a pretty fun past couple of weeks.  Michael got some work done on the exterior of our house, we went swimming, to the toy museum, had a dinner party, saw a lego exhibit and spent some time with some good friends who live in the neighborhood.  Yesterday Sophia picked the first tomato from our garden at our house.  She was so excited.  Everyday she helps me water and pull weeds from our small veggie patch.

I will be sure to post again when she is feeling better.  She is taking a nap now and I need to take advantage of that and get caught up with some chores around the house.

We had our bi-annual cardiology appointment today.  It went as well as these appointments could possibly go.  He did an echocardiogram in his office and said everything looked the same as last time.  Her o2 sats were around 84 and said her color looked awesome.  So her said no surgery for a while, no  heart cath this summer and he would not need to see her again for 6 months.  He also said we could try to get her off one of her heart meds (lasix).  This is so great because it makes her urinate a lot and has prevented Sophia from being totally potty trained at night.  I think if we could get her off this medication she would no longer need to wear a pull up to bed.  So we were so relieved after the appointment.  I am always nervous leading up to these visits.  We are so glad to report that there is basically no news to report.

Like they say… no news is good news.

As some of you who read this blog may know, we are all vegetarians at our house.  Lately Sophia has been eating tons of peanut butter.  She wants to eat it for every meal and every snack.  I know this is just a phase, but yesterday I decided to start limiting her peanut butter consumption.  She eats a fairly balanced diets with plenty of fruits and veggies, but I just want her to have variety in her foods.  She is not  very happy about my decision to limit her peanut butter.  It is so funny, the girl just loves it.  We buy organic peanut better and she usually likes to have it on bananas, apples or wheat crackers.

Sophia is for sure enjoying her summer.  Especially the sleeping in part.  She (and Michael) are not morning people so it has been so nice for her to be able to get extra rest in the morning.  I just wish she would take a nap in the afternoons.  There is such a big difference in her when she has a nap, she is just so much more happy.  Most days she is quite determined to not take a nap unless she is totally worn out.

We are looking forward to some quality family time over the next couple of weeks.  Starting Friday Michael is off work for two weeks.  We are planning to prep the exterior of the house to paint.  I know this is going to be a ton of work, but our house is in great need of some TLC.

Thanks as always for checking in with us.

I wanted to post that the appointment went well with the pulmonology clinic.  He did not change any of her medications that she takes.  He did write for a script for an inhaler version of a medication that she currently takes using her nebulizer.  This will make life easier when we are out and about.  He was pleased with the plan that we had come up with the last time that we had visited him.  This plan is truly working,  and has prevented Sophia from getting any upper resp infections in the past few months.  The doctor did suggest that Sophia be tested for Allergies and said that if she does have specific allergies that we could treat them more effectively  with specific medications.  So we will be doing allergy testing in the near future.

We started  a kindermusik class yesterday.  She loved it and talked about how fun it was and how she got to play lots of different instruments all day.  I thought it was a really great class.  It was taught by a music therapist and was very well organized with great materials and all the children seemed to really enjoy the activities.

Today we went to Deanna Rose Farmstead.  It is a children’s farm where the kids get to feed the animals and take horse rides, wagon rides, etc.  It was a a beautiful sunny day here and she had a ton of fun.  She liked feeding the baby goats with a baby bottle the best.  Sophia was so sweet and gentle with the baby goats and wanted to give all the littlest ones a drink.

Thanks for checking in with us.  Have a good weekend everybody.

Heart Walk 2009 was a success in my book.  We had the smallest team we’ve ever had in four years, but the day went great and I could not have been happier.  I sincerely want to thank the people who joined our team and for those who donated their money to sponsor us in the walk.  This was the first year that Sophia physically walked in the event.  She had a great time interacting with all the walkers and their dogs.  Please click on the picture of Sophia in the previous post, which will link to Michael’s flicker photo account to view all the pictures that were taken that morning.

Yesterday was Sophia’s first day of summer.  She slept in late, ran in the sprinkler in the morning and played with her match box cars in the afternoon.  Needless to say,  she was in a great mood and so happy all day long.  Today I am enrolling her in a swimming class and a kindermusic class.

Tomorrow we have a follow up appointment in the pulmonology   clinic at the hospital.  I will be sure to post how it goes.

More Photos Here

I haven’t added a new link in a while. But I just added a link to Baby Henry’s blog in the right column. 

Henry just had his first heart surgery (a central shunt) after his mommies Kate and Julie were originally given no surgical options.  

His heart defect is very, and I mean VERY, similar to Sophia’s heart defect.  Henry was diagnosed with pulmonary atresia with VSD (ventricular septal defect) and MAPCAs (multiple aorto/pulmonary collateral arteries). He also has DiGeorge syndrome.

Henry is home from the hospital and had a very routine and speedy recovery from surgery.  Please click over to http://keepingupwithhenryv.blogspot.com/ and offer Kate, Julie and Henry your support.

Recent events in my life have caused me to think a lot about Sophia as an individual, not just my daughter.  I often say I can not keep up with how fast she is growing up.  Being a parent is a tough job.  Michael and I attended our bi-monthly CHD families support group meeting this week.  We had an adult CHD panel and it was very interesting to hear their thoughts and opinions on raising a child with a CHD.  I am sure everyone in the room interpreted what was said slightly differently.  One of the things that I took away from this meeting is that Sophia’s heart condition is hers not mine.  What I mean by that is she is the one who has to endure all the doctor appointments, meds, hospitalizations, needle sticks, etc.  I’m just there to support.  She will have to be the one to manage and understand her health when she is an adult (of course Michael and I will be there for her always in any way she wants us to) but the burden is hers.  I think sometimes that this happened to me. Like “I” had a child born with a CHD.  I also learned that I need to teach Sophia emotionally how to deal with her CHD.  These are things that I just had not thought of yet when it comes to her parenting.  I love Sophia with all that I am and I would not change anything about her.  I just want to teacher her everything she needs to know to be a confident and independent girl and woman some day.