But now, this is what the LORD says — he who created you, Jacob, he who formed you, Israel: "Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you, I will give people in exchange for you, nations in exchange for your life. Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west.
Isaiah 43:1-5
Thank God our little princess is great! It's been over ten days since she's home again, and the days are quiet. She is eating very well, better than before, the intestine returned to work correctly and the inhalations are finished.
Coming home is that we realize how much we were very tired after 16 days of hospitalization, because besides the great emotional stress, we had very little and bad sleep all this time. For now, we are slowly returning to our routine.
We got plenty of rest at home and could stroll a few times. Some days have been rainy, others cloudy and windy. But once we see a little sunshine, we went down to stroll and Vitoria liked to go out and feel the sun, the wind, the noises from the street... What a gift from God to live it all again, walking "wireless" (without need of feeding tube or oxygen), eating, playing, bathing, sleeping close to each other! She was even able to walk on her skate last Sunday, she made a lot of effort and was able to walk down the aisle, so beautiful!
She is having hypothermia sometimes, I think it is because of this crazy weather (it was supposed to be hot at this point of November over here!). She is also still angry with her teeth. The two molars (the same of last month!) have not come out even half from the gums. Because of this I scheduled an appointment with a dentist for her, to see what can be done to help these teeth to grow.
On Tuesday we went to physiotherapy! Everybody there were very happy to see that Vitoria has recovered. She is great, a little stiff in the movements of legs, but she is in the same old way, raising her head, holding the trunk for a few seconds, complaining and fighting in the moment to stretch the right foot... this foot worsened somewhat, since she spent several days sleeping without her orthoses in hospital, and that foot has always a tendency to warp back in. But with enough stretch it gets better again.
Then we went to her pediatrician. She was so happy to see that Vitoria is great. The doctor stopped the medication for stomach (motilium and label) because she no longer needs these medications and she is having too much gas, perhaps because of them. So, thank God now our girl do not need to take any more medicines!
Fortunately her pediatrician is also a pediatric nephrologist and she asked two complex tests to investigate the cause of recurrent urinary tract infections that Vitoria has had, and whose last evolved quietly and quickly led to septicemia that was so painful for our Vitoria and all of us. She will have to do a complete urodynamic study and voiding cystourethrography. She asked to do these tests in a hospital and not in the laboratory. Also prescribed an antibiotic for Vitoria for 7 days, starting 3 days before the exams and ending three days after, as the exams are invasive, with passage of a probe, and there is a risk of getting an infection during the procedure itself. Because of this she will have to do an urine test a few days before and another urine test a few days later to make sure that no bacteria took advantage of the situation.
Urinary infections can have various causes. In Vitoria's case, we have to investigate whether it is of neurological origin, for example, by a poor command of the brain, bladder can retain an last bit of urine instead of being completely empty, favoring the growth of bacteria, or if there is some small malformation in any of the urinary channel (apparently everything looks normal on ultrasound). Depending on the results there are medications that can help strengthen the bladder, there are also exercises that can strengthen the muscles used to urinate. A doctor who served us in hospital also explained that children with neurological disorders, such as Vitoria, have an overall relaxation of the muscles (hypotonia), and this may undermine the process of elimination of urine and promote infections.
But we have to do this research to find out, because there are many children who have urinary infections without having any problem as mentioned above.
Anyway, whatever it is, we know that, like everything has always been, our hope is in God who created her and who has control of each beautiful hair of her head... Sometimes I get worried about the present and the future, there are so many things that we have no control!
But stopping to think about everything we have experienced, God has always reminded me that we have walked on water, looking for Him and for Him being sustained. And we want to continue walking with Him, an step at a time, over the waters of his powerful presence. There is no need to fear.
