Our little girl's heart is so complicated. I am so grateful for her repair, but it is making it difficult to read her echocardiograms. Typically, velocity is measured to calculate a gradient, which illustrates the severity of Pulmonary Stenosis. For whatever reason, Natalie's gradient calculations range greatly, making it difficult to get an accurate assessment. Dr. Reddy and our cardiologist decided it would be best to measure her right ventricle output, as these measurements are more consistent with her Cath. They are also watching to make sure her valves are not leaky. To say the least I am confused, and we are still waiting. We will do echo's monthly, and likely a sedated one in the coming months. It sounds as though we may be able to put off surgery for awhile, but you never know. Things change quickly. We're also meeting with our electrophysiologist next week. We will be discussing her arrhythmia's medications, treatment, etc.
She is battling a cold right now. She is strong, and managing fine. It does seem like we are suctioning constantly! She started antibiotics today to clear up another ear infection. Hopefully she will be feeling better soon.
Did I mention she is a whopping 16lbs...My goodness. My little chunky girl. Although she doesn't go out much she still wears all of her adorable outfits, shoes, bows, and hats! She is dressed better than most.
I can already see sibling rivalry. She takes Samuel's toys, and Samuel thinks everything is his. Of course she can't fight back yet, but I know one of these days she will.
Michael and I are in full swing, and managing well. We found out that she didn't qualify for Developmental Disabilities. All I can say is they said no to the wrong family. I will apply, and reapply, and reapply until she gets it. She will really benefit from it, and I am determined for her to get it. There reasoning is terrible, and completely incorrect. They said that although she has CHARGE, it doesn't mean she is cognitively delayed. Ironically enough she qualified for OHP, the Oregon Health Plan. What a relief and answer to prayer. Many of our costs, like hearing aids, co pays, and prescriptions should be covered now. I am grateful that God continues to equip us with the skills and means to take of her.
We continue to move forward and are even starting to talk about future plans. Did I just say future plans. Yes I did! It feels good to plan, and dream. Although Natalie still needs to spend a lot of time indoors, we are excited to get Samuel involved in some activities. I am also planning on volunteering for the Red Cross again.
Today I got a package from the kids at Lava Ridge Elementary, where she is a Sparrow. All I can say is how sweet kids are. Raising a special needs child is frightening, especially knowing that her peers may not accept her. These kids have already accepted her as their friend. I am in awe, and look forward to her school days. And hey if kids do tease her she has her big brother to look at for her!
She loves sucking on mango and apple slices. We're still working on tasting foods. I realized that as long as we consistent and give her opportunities to try food in a fun manor she will eventually consume enough. I was imagining that she would consume her daily calorie intake via rice cereal, and purees...and than I remembered she is only 7 months old and it she will when she is ready. I have no doubt that she will be an oral eater.
We're planning on tubes, and another MRI in the next few months. As we know more I will keep you posted. For now enjoy these moments of celebration with us.
Blessings,
The Pierce Family
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