Monday, June 2, 2014

Time is just flying by. Where did this year go? If I could stop time and hold on to Natalie's last month as baby I would. Of course I want her to catch up to her milestones, but I am quickly learning to stop wishing time would pass, and hold on to the moment. Her sweetness and precious giggles leave me speechless. I can't tell you how sweet her laugh is, or  how amazing it is to watch her play with Samuel. She loves her big brother more than anything. She is such a happy baby, and loves going out with the family. Being able to take her out more often has made such a difference for her and the whole family. Summer is here and we intend to live it up while it lasts.

So lately I have been asked a lot of questions about her delays. She is delayed, and is on her own clock and will achieve things as she can. She is determined and very smart. She takes in so much and nothing gets by her. I think her sensory impairments make her more in tune with her environment. She watches everything, and studies her environment intently. Natalie can sit unassisted for a minute, and she occasionally rolls to her tummy. Usually it's to see big brother or a favorite toy. She loves music, bath time, and going for walks.

Heart wise she is doing good. Our last echo showed the same results as the previous ones. Although it is still bad, she seems to be doing well. As she becomes more active, she will put more strain on her heart.  Her Surgeon and Cardiologist plan to wait until she shows signs of heart failure before surgery. Michael and I anticipate surgery before late fall, or next spring. Of course we could be wrong and it may be a lot longer or next week. It's really up to Natalie, but I don't see Dr. Reddy waiting much longer, and would prefer repairing her heart before Flu season kicks up again. Her last few monitor observations showed elevated QT levels (this could cause heart failure) so she is currently being weaned off her arrhythmia medication. The original plan was to keep Natalie on arrhythmia meds till she was two, but now the doctors are thinking it may be best to get her off them. Hopefully this works because there are just a few more drugs that she could go on.

It's confirmed that she has profound hearing loss in her left ear. Our doctor's don't believe a hearing aid will make that great of a difference for her left ear. The plan is to purchase a softband BAHA so she can get as much sound to her right ear. They are very expensive, so hopefully our insurance will cover most of it. Her right ear is still within the normal range. The plan is to do hearing tests every few months to track any changes. CHARGE kids experience various degrees of hearing loss, which can also change over time. Natalie's hearing loss is a combination of conductive and neurological, so the trick is going to be treating the conductive loss as much as we can.

Our Opthamologist confirmed that Natalie has a malformed optic nerve in her left eye. Although her MRI showed no optic nerve Coloboma, it is obvious that her eye definitely works harder to focus.  It's likely she will start wearing glasses in the Fall. Her right eye seems to be 100% normal. Patching seems to be impossible, as she always finds away to pull off the patch.

She still sees all the usual therapists. They all love her of course, and are amazed how much she is improving. Unfortunately, Early Intervention (EI) stops through the summer. Our Physical Therapist through EI is amazing, and has been instrumental in her growth and development. Natalie is so blessed to have experienced and caring therapists working with her. 

Her head shape is improving a lot. Yay!. So grateful the helmet is helping. It's not fun traveling to Portland every other week to get the helmet adjusted, but at least it's improving her plagiocephaly. She will wear the helmet for a few more months at least.

Now for the biggest change...She is being weaned off of her G-tube. At first I was so nervous, but after 5 weeks of weaning, she is eating all of her meals during the day orally. Drinking is still challenging, but she is improving day by day. Over the last two weeks she gained 5oz. Go Natalie Go. She is our little rock star. If I have learned anything this past year is to trust your instinct, and pray. Pray and believe that God is faithful, and through him all things are possible. Natalie is doing so much better in this area than anyone would have thought. Of course we know CHARGERs defy the odds. I am still hoping by her first birthday she be off her G-tube completely.

Life at the Pierce household is ever so exciting. Terrible 3s are at the height. Raising a busy three year old keeps us busy. Samuel just started preschool for some much needed time away from mommy and daddy. It's been really good for him to be around other kids,  and mommy and Natalie get to go to appointments by ourselves.

There are no words to describe how blessed we are. A year ago we had no idea what to expect with Natalie. We didn't know if she would even come home from the hospital. I wish that I could see into the future and know for sure that my baby girl is going to be fine. I guess this is why I have faith, to believe in what is not seen, and asking fervently for God to make Natalie whole. I don't see CHARGE syndrome and all the crazy medical issues that come all with diagnosis. I see a beautiful baby girl made in God's image. It's still hard to believe God gave her to us. What a gift, and privilege it is to be her mommy. 

The Pierce Family 


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