Hope for Emma's Heart: Emma's Medical Update and a Few Pics

It has been an extremely busy month for us with Emma’s 6-month check-ups with every specialist on her team, so I will give you a brief update on all of her appointments.

Scoliosis: Emma saw her orthopedic doctor today and her scoliosis had improved once again! Her doctor was very pleased with Emma’s progress and told us to go home and worry about more pertinent aspects of Emma’s healthcare because Emma’s back is stable and is not impacting her pulmonary or cardiac status at this time. The ortho doc also looked at Emma’s hips to make sure everything was forming properly. Emma’s hips looked great as well.

Pulmonologist/Allergy Testing: Allergy testing is something Scott and I as well as her pulmonologist have been wanting to do for quite some time; however, we needed to wait until her heart cath/eye surgery was finished before we could proceed. During the allergy testing, Emma received 72 pokes on her back with various allergens. We were all expecting some major allergic reactions to certain outdoor allergens (ragweed, etc.) since Emma has had major asthma issues after being in Oklahoma. However, that would be way too easy. Emma only had one allergic reaction: Lamb’s Quarters. Have you heard of Lamb’s Quarters? So, I ignorantly said “well, that’s interesting because we don’t eat lamb.” After laughing, the doctor informed me that is was a weed. Of course, we were baffled yet excited about this news. We headed to Oklahoma that weekend for the first time as a family since being in pre-cath isolation. As soon as we crossed back over into Texas (slight exaggeration), Emma started sneezing and having a runny nose. Within two days, it exacerbated to a full-blown asthma flare. This resulted in meds, several days of multiple breathing treatments and a few sleepless nights. We are still unclear on what is triggering these asthma flares which is super frustrating, but we are pushing forward and trying to still let Emma live and experience life.

Ophthalmologist: We had a follow-up with her optho and he was very pleased with how her eyes healed. Her right eye is still the weaker eye, so we are patching the left eye for an hour each day to try to encourage her right eye to work more efficiently.

Cardio: This is the update that I am unsure how exactly to write. You see, Scott and I are at an impasse with Emma’s cardiac care. Dallas has taken phenomenal care of our sweet baby since before she was born. We have known all along that there might be a time in her life that we had to pursue other opinions in order for us to make the best decision possible for Emma. Well, we have reached that point. Please know that we there are no hard feelings toward Dallas and they are still Emma’s primary care team. Her team is being very supportive and caring in this new journey. We have requested opinions from Boston Children’s and CHOP. We will hopefully hear something back from the cardiac specialists from these centers in October. Once we have that information, we will discuss it with our Dallas team and pray for guidance as we make a HUGE decision on the next surgical step for Emma.

Feeding Therapy: While we are waiting on the next step, we have decided that it is time to push Emma in her feeding therapy. We have had such caring therapists that have worked with Emma for a few years and have aided in her making tremendous progress in all developmental areas. One area that she continues to struggle in is with liquids. Emma has no desire to drink, so we have enrolled her in an extensive feeding program through Baylor called: Our Children’s House. Emma will be enrolled in the day patient program. Emma will attend this program four days a week for five weeks beginning at the end of October (insurance clearance/waiting list). Here is a brief description from their website:

On the road to better eating habits, some children require more intense, frequent therapies. In our Day Patient program, your child sleeps at home with you, but is in treatment with us from 9 a.m. to 3:30 p.m. weekdays.

• Sensory integration therapy for texture, taste and sensory problems

• Oral motor skill therapy for swallowing and/or chewing problems

• Psychological consultation

• Four to five structured feeding, occupational therapy, speech therapy and psychological consultations each day

We are being cautiously optimistic about this new endeavor. We are praying that Emma is receptive to this intense therapy and that she is able to make progress with her drinking.

Neurologist:

Her neuro appointment was short and sweet. Emma’s neuro was happy with her progress and said we will just continue to monitor her.

Well, that about wraps up her medical updates. There is fun stuff to catch you up on, but that will have to wait for another night.

As always, God is good! All the time! God is good!

Sarah