Sharing a blog and a dream

I´d like to share here The Story of Baby Faith Hope Blog where Myah, Faith Hope´s mom, shares a dream about a non-profit book that would show the world our real-life stories and photographs of our anencephalic babies, so that people could change their view of anencephaly.

It would be so so special.

Please visist her blog and if you think you can help, you can contact her.

Trying to crawl at 10 months

It is not easy but she´s trying hard!

Light, noise and mathematic

Be my strong Rock, the strong place of my salvation; for you are my Rock, and my safe place.

 

For you are my hope, O Lord God; I have had faith in you from the time when I was young.

You have been my support from the day of my birth; you took me out of my mother's body; my praise will be ever of you.

 

But I will go on ever hoping, and increasing in all your praise. My mouth will make clear your righteousness and your salvation all the day; for they are more than may be measured. I will give news of the great acts of the Lord God; my words will be of your righteousness, and of yours only.

You, who have sent great and bitter troubles on me, will give me life again, lifting me up from the deep waters of the underworld. You will make me greater than before, and give me comfort on every side. Psalm 71

 

Dear friends,

Last weeks were so intensive and tiresome. Many things happened but we weren´t able to stop and write about them. Our precious Vitoria has gone to many appointments and has been very busy. She had to change her boot on right foot every week, she has physiotherapy three times a week, and we have to take her to pediatrician, neuropediatrician, ophthalmologist, otorhinolaryngologist... uncountable doctors to offer her the appropriate following she needs for her development.

The treatment with the plaster boot has finished! Now she´s using a special removable pair of boots called Dennis Brown (don´t ask me why it has this name!). Now it´s much easier to give her a bath, because we don´t need to wrap her leg with plastic bags to protect from water.
She´s a beautiful little girl using shoes! The treatment of her foot is important not only for esthetical reason, but for her physical development. At physiotherapy she´s having so many improvements. She´s stronger and having many progresses in her attempt to crawl. She still  needs more strength on arms and the right leg, in which she was using the boot, is weaker, thiner and a bit trembling. Even that, she can move it much better than before the treatment.

By the way, the treatment was very painful...
Every time she had the boot changed, she spent three days crying and complaining, she didn´t want to eat or sleep. I couldn´t also sleep or eat well, trying to comfort her and trying to make she eat something. We had to put her in our bed at night so she could sleep a little - and so could we!
Her pain is our pain, so we had to be patient and lovely with her, so that she could feel protected and loved during these hard days.

There is some brain working here...

Finally we could find a good neuropediatrician last month. She listened us, read carefully all her exams, asked us many questions and, after all, she examined Vitoria. She talked with her lovely and laid her down with face down to bed. After a moment, Vitoria lifted her head up and started moving arms and legs. She was great and showed her will to live and overcome herself.

So the doctor finally gave her opinion: There´s some brain working here. By the images in her exams, it seems to be very immature. But with time and stimulus, this brain can rearrange itself and have some development. We´ll try to teach her things from outside to inside. All stimulus you´re giving her is very important. You can stimulate her with too much light and noise.

Last month Vitoria also had an urinary infection - we found a bacteria in her urine during some routine exams. It wasn´t serious, it was an opportunist bacteria and her pediatrician prescribed ten days of antibiotic to combat it. We repeated exams and everything is ok now.

Medicine or mathemathic?

We also took Vitoria to an ophtalmologist. Still at hospital, an exam showed she had hypoplasia of both optical nerves, what means they are malformed. But they don´t know exactly if she has or not some visual perception or what is the prognostics for her sight. The first ophtalmologist we went was very respectful and kind. He got impressed with Vitoria reactions and encouraged me.

He told that, in medicine, 1 + 1 isn´t always 2. We need to repeat exams during her development because things can change. I can´t tell you she will never have any visual perception. It will be a pleasure for me accompanying her.

Always when we go outside with her she lift her head up and open her eyes, and keep moving her eyes from one side to another, as if she could see something. That´s why we believe she can perceive luminosity.

We took her to a second ophtalmologist to examine her retina. He told me that, ´in medicine, not always 2 + 2 is 4. We want it to be 4, but sometimes it is 3´. Well, all this mathematic lesson is to explain our sight is formed at our brain. And brain is an extremely plastic organ. A part can assume the function of other when it is damaged, and it happens very often with children - this is the famous neuroplasticity. By the moment, the prognostic for her sight is bad. But when we remember the prognostic for her life was worst, and she is alive with us, we remember nothing is impossible. We don´t have any control and can do nothing to help her to see. Only God can do it if He wants. We only can pray and believe.

After so many accounts, this is the result: her eyes are good, but we need a miracle in her brain. For now, we were advised to look for a neuro-ophtalmologist to receive a better opinion.
We continued our marathon going to an excellent otorhinolaryngologist. She was very interested for Vitoria and she asked me many questions. She also asked a new hearing exam and a tomography.

At hospital, a hearing exam showed Vitoria can hear a little, but not 100%, and they don´t know how she understands sounds. Doctor told we need to repeat this exam because results can change while she grows up. A tomography showed she has many alte­ra­tions in bones of her face, such stenosis in nasal and hearing bones, and we also need to investigate it. So Vitoria will use a hearing prosthesis to offer more stimulus and consequently help in brain development - we don´t know how much she will answer to this stimulus, but we will do all we can for her.

Change in speech

Some sentences we have heard lot of times recently are ´we don´t know, we can not foresee what will happen, this can change, we need to observe, it´s too early to say something conclusive...´ so different sentences from what we used to hear during pre-natal exams, when doctors were so full of certainties, saying she would die right after birth and that things would never change, that it would be much better terminate pregnancy...

It is very good to hear from so excellent doctors that they are not God and they don´t know everything. God´s creation is beautiful and amazing and there are mysteries only He can explain. And sometimes He surprises us to show He is God, He created us, He knows us more than ourselves. And when it is in His purposes, He can make the impossible turns possible.

Our beloved victorious girl has a delay in development, something that could be waited. Of course this will never change 1 cm of our love for her. Actually, I see things from a different point of view. She is a child that was expected to live a few minutes or hours after be born. And she is 11 months old. This doesn´t seem a delay to me. I think she is so smart and intelligent. Children live and develop with a whole and perfect brain. Vitoria is developing with a small piece of malformed brain that was preserved by miracle (since doctors don´t know how to explain it, I think this is a good answer). Her beautiful face has many malformed bones. And despite of that, she can breathe very well and, to show God´s mercy, she´s so pretty!

We pray and believe our Father in Heaven can change any sentence and any diagnostic. But we also trust in His perfect plans for Vitoria´s life. We totally respect God´s time and Vitoria´s time. Her rhythm and her limits. But we have decided only she can show us what are her limits. We won´t put limits to her before give her the opportunity to fight. And we won´t take from God the opportunity to show His power. That´s why she´s alive. And fills our hearts with so much joy.