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!

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.

Joy

When the Lord made a change in Zion's fate, we were like men in a dream. Then our mouths were full of laughing, and our tongues gave a glad cry; they said among the nations, The Lord has done great things for them. The Lord has done great things for us; because of which we are glad. Let our fate be changed, O Lord, like the streams in the South. Those who put in seed with weeping will get in the grain with cries of joy. Though a man may go out weeping, taking his vessel of seed with him; he will come again in joy, with the corded stems of grain in his arms. Psalm 126

Our dear Vitoria is going well! We had a week kind of hard because of teeth but I think she's getting used to it and facing so bravely the growth of the dreaded molars.

Despite the spring, the weather here is kind of cold, when Vitoria just loves to take a nice hot bath. She gets very relaxed and smiles to us. She enjoys the moment we clean her face with a cotton and also the time to use shampoo. We massage her scalp and she smiles a lot. Well, who doesn't like a good massage and a hot bath, isn't it?

An indescribable sense of joy and freedom

Make no store of wealth for yourselves on earth, where it may be turned to dust by worms and weather, and where thieves may come in by force and take it away. But make a store for yourselves in heaven, where it will not be turned to dust and where thieves do not come in to take it away:
For where your wealth is, there will your heart be.

The light of the body is the eye; if then your eye is true, all your body will be full of light. But if your eye is evil, all your body will be dark. If then the light which is in you is dark, how dark it will be!  But let your first care be for his kingdom and his righteousness; and all these other things will be given to you in addition.

 Jesus, quoted in Mathew 6:19-23; 33

It's been a while since I came here calmly to tell the news. Our beloved Vitoria is going so well! We have a busy routine, we left at least three times a week when she does physical therapy, speech therapy and occupational therapy. At home, we play, we walk, we spend a lot of time together.

Vitoria has an excellent health and is an adorable, sweet and quiet child. Her biggest challenge has been teething. Up to 1 year and 1 month of age she had no teeth, but since then, every month she gets a new tooth. For some children this is a simple process, but for her it has been slow and painful. Now she has six teeth, and her gums are all swollen and red. I believe that there are four molars in the growth process trying to break through the gum and there are days when she gets desperate.

One day, when I tried to give her food, she pushed my hand away, then she put her hand over her face and pressed her cheek very strong, and spoke "aguuuu", as if she was saying, "it hurts, Mommy, I can not eat!"

She also does not like to sit in the car seat. Sometimes she is crying and squirming, but when I caught her in my lap, she sighs with relief, and then she relaxes and sleeps as if nothing had happened.

In contrast to frown and tears, she has also participated more when we play. One activity she loves is rolling. I put her in our bed and I help her to roll, she smiles, and then when I stop, she starts trying to roll alone. Sometimes she cries when she falls back, it seems she is afraid of getting hurt. But soon she tries to untap and continues playing. She loves me to do a double roll, helping her to roll and then roll again.When she can roll all the way alone, we clap, then we took her and give her a big hug and lot of kisses. She makes a beautiful face, of happy-cute-and-loved little girl. (When she can not scroll to the end alone, we help her finish the roll and then we kiss and hug her in the same way ;-)

She's having incredible progress. The simple fact of being alive and healthy is already a surprising victory and a great joy for us. But in addition, each month she features new reactions and progress that fill us with pride and courage. She can already eat food with small pieces. For lunch and dinner, she eats a soup with vegetables, meat and grains, and now I knead the soup with a fork and she mashes the pieces of vegetables before swallowing. In addition, she has expressed much more with her voice, she cries, complains, cries out in different ways and let us know if she's angry, if she's in pain, or if she does not like something.

She is also having many advances in her attempts to crawl, getting stronger and having better movements with arms and legs. Another great thing is that she is being able to stand when she is based on us and she loves it. Of course she still needs more balance and strength in her column, but her legs are very strong and it is a big surprise for us.

So, our little princess has shown more her strong personality, saying clearly what she dislikes, and also learning to express what she wants, what she likes, what makes her happy. Even without saying a word in our Portuguese, she tells us so much, and in a so clear, intense, and beautiful way, that brings me an indescribable sense of joy and freedom (and I wonder why we need so many words).

Joy of seeing that she is discovering herself, that she is communicating with us and helping us to know and understand her. Joy of seeing she is growing and becoming a loving and happy child. Her limitations do not prevent her from communicating with us - just make she communicate with us through a different language (but only those who approach of her with love and respect are able to understand this language, and have the privilege of participating of this different, but so special and beautiful world).

And the sense of freedom is because there are no limitations or challenges that can silence our happiness.

She is so precious and we love her more than ever.

  

Wonderful days, but still sore gums

Two weeks ago we spent a weekend at a ranch hotel, it was our second trip with Vitoria, and the first time we stayed with her in a hotel.

It was very cold, but there was a wonderful heated pool. Vitoria loved the warm water and was very relaxed
  
 

Last weekend my parents came to visit us and we walked in the Burle Marx park, a beautiful park here in São Paulo.

She is still suffering so much with her teeth. She has six teeth now and I believe that the molars will grow soon. She keeps pinching her cheeks because of itching and she is also having a slight fever.

But thank God it's nothing serious and she's fine.















Hard nights: another tooth growing

Since last Saturday Vitoria is restless and doesn´t sleep well. It seems her sixth tooth is growing! She is having lot of colic, gas, and doesn´t want to eat, just wants to drink milk and juice. She is also having excess saliva, that she tries to control, but sometimes she chokes. Last night she hardly slept and complained a lot. Yesterday we didn't go to physiotherapy, because she had barely slept at night and was very agitated.

 

When Marcelo arrived home, I was holding her and told him that we hadn't gone out because she wasn't doing well. He got close to her and asked if she wasn't well. She began to cry, Uh-huh, Uh-huh, Uh-huh, as if she was saying, I'm not well today, Daddy, and threw herself at him.

Today I took her to the pediatrician, she examined her mouth and was very impressed because all her gums are swollen. It seems that all teeth are growing close together ... :-( I hope that tonight she will feel better and we can all sleep!