Beautiful days!

Spending an amazing time with daddy

smilling while playing with daddy

 

with uncle Leonardo during a walk in the mountain region of Rio Grande do Sul

playing in the backyard of Grandpa and Grandma Alice and Bruno

putting my feet on the grass

wow, how much space to play!

Mom stretching my foot

hey, I'm walking around in Grandma's lap!

they take me to everywhere!

touching the flowers

23 months with joy and love

We had some very busy days with lot of appointements. Vitoria is doing well, but last week we both got a cold. After the shock of last month, we were a little worried, so I took her to the pediatrician. She was coughing and mumbling a lot, I suspected that she had a sore throat. The pediatrician confirmed that she had laryngitis and pharyngitis and prescribed a syrup that helped a lot and coughing was over in a few days.
Luckily she has been able to eat and drink normally.

Two weeks ago we had schedulled an exam to investigate the causes of urinary tract infections. I scheduled it  two weeks before in the laboratory, but just getting there a nurse told us they did not perform that exam at her age. It was a surprise, because they had asked me her date of birth at the time of scheduling. I gave her antibiotic three days before the exam, and Marcelo missed a day of work to go with us, but getting there it was all in vain, they only perform this test in children over four years old. There was an unfortunate mistake from the lab! Then we must take this exam only in January and give her antibiotic again. :o(

We also went to a dentist who treats patients with special needs, Dr. Adriana Zink. I heard about her through her blog  (http://adrianazink.blogspot.com/). She has a very special work with autistic children, but has extensive experience with many other special needs and neurological disorders. She gave us great directions. She said Victoria's teeth are growing slowly, but right now everything is fine and there is no need of intervention. If she was not eating and losing weight because of teething, so it would be recomended a small operation to cut the gum around the teeth, but it is not the case. She recommended that in the most difficult days we give her a painkiller half hour before eating, and help her chew a teething ring or brush to stimulate. 

She also said it is very important to take extra care with hygiene of the teeth, strengthening the habit of brushing teeth early so that when she grows she continue collaborating in this activity. She said that Victoria is having a good "stomatognathic" development, ie, the whole structure of the mouth (jaws, teeth, etc.) and that it is very favorable that she breathes through the nose, she had a good positioning of the tongue, and a good control of saliva, among other things she mentioned. She also reinforced the importance of follow-up with a speech therapist, so that she keep on receiving stimuli and evolving. I did not know that this region of mouth may or may not have a proper development, but I was very happy to know that Victoria is well!

For all children it is important going to the dentist, and for children with neurological disorders, even more so that we can identify and treat early any problems or difficulties. The appointment was well worth it, the dentist was very helpful, asked me to send her the CT scan to check on the teeth and also said if I want I can send through e-mail photos of Vitoria´s teeth to see if everything is doing well - especially those molars that are taking too long to grow.

We also had to make adjustments to the orthotics and hearing aids that were having problems.

And finally, Victoria and I went in last Thursday to visit her grandparents Bruno and Alice, in Rio Grande do Sul (south of Brazil). Flying alone with Victoria was a great adventure with a few misadventures but thank God everything went well! Marcelo is coming tomorrow to spend Christmas with us. 

With such a rush, I apologize because I am not even able to respond to emails, I appreciate all the messages I have received from so many new friends, but for now I have only managed to read them.

Despite the cold and teeth, our beloved Vitoria remains beautiful, expressive, endearing, cute, making us more in love every day for this so sweet and kind baby girl!

And to our joy and gratitude last week she completed 23 months that have been lived with much joy and love!

These are some pictures taken with the beloved great grandmother Maria Victoria, who this month completed 93 years old!

The sun is still shining!

But I tell you, love your enemies and pray for those who persecute you, that you may be children of your Father in heaven. He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. If you love those who love you, what reward will you get? Are not even the tax collectors doing that? And if you greet only your own people, what are you doing more than others? Do not even pagans do that? Be perfect, therefore, as your heavenly Father is perfect. Matthew 5:44-48

There will be no more night. They will not need the light of a lamp or the light of the sun, for the Lord God will give them light. And they will reign for ever and ever. Revelation 22:5

'Never again will they hunger; never again will they thirst. The sun will not beat down on them,' nor any scorching heat. For the Lamb at the center of the throne will be their shepherd; 'he will lead them to springs of living water.' 'And God will wipe away every tear from their eyes.' " Revelation 7:16-17

When I go out and see that there is a sunny day, I remember how much God has been good and merciful with us. I remember what Jesus said that He makes the sun shine on the righteous and unrighteous. I think about so much cruelty that there is on this earth, and God still makes the sun shine on us all. He still sends sun, rain and life, with such abundance. He still loves us unconditionally, whether we scream with Him, deride him, whether we get back to Him and ignore that He exists. Whether we accuse Him for all suffering that there is on this earth that we ourselves have dominated, transformed and destroyed. He still keeps up his promise of forgiveness and freedom for those who simply seek for Him with a humble heart and accept the reconciliation that He gave us grace in Christ.

I know that any act of goodness or justice in my life is fruit of his Spirit, that in me there is so much weakness and injustice, and that I do not deserve to be here living it all. But all this is a demonstration of his love and mercy. That there is no merit in loving my daughter for being my daughter, whether we live in a world where, unfortunately, many have forgotten even to love their own children... He doesn't want us to compare ourselves to others to consider ourselves righteous, but with Jesus.

And for Jesus, true love is to forgive those who trespass against us, who doesn't understand us, who mocks us or our loved ones. When I think about it, I remember to thank the sun shines on the righteous and unrighteous, because the sun shines on us. Because I'm still not perfected in love.

I am so thankful because we have started last month in the ICU with our daughter in critical condition, intubated, attached to several wires and in great pain, and today she is fine and can go for a walk in the hot sun that shines and reminds us of God's unconditional love. Which reminds me of the promises that one day He will be our sun and He will wipe away the tears from our eyes for all the suffering we faced here.

I know for some people this may look very nice, but utopian... but we have seen the replies of this God in our lives, a God truly alive and very close, much bigger and more powerful than we can ever imagine or describe. He who laughs and cries with us, who does not not give up on us, who has compassion and listens to our prayers.

In this God we are grateful.

 

Overcoming limits

There is no need to fear

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.