Not improving

I was so happy in the first few months following our relocation because Sophie’s health seemed to improve, I thought we had finally reached the first step on her journey to recovery. As I look back I now know it was the calm before the storm that I had not been anticipating. Sophie’s health seemed to be improving and she even started putting on weight which was HUGE for her.  In the last seven months she has gained a little over four pounds and although it has fluctuated when she has been sick as soon as she feels better her weight works itself back up to 28lbs and has steadily maintained. I remember praying for the day when she would  gain and maintain her weight after always being told she was failure to thrive. I long-awaited that day because I had been told by so many medical professionals that once Sophie began to put on weight she would become stronger and it would help her immune system strengthen. I clung to that hope for so long and here I am today realizing the weight has not really made a difference in building her immune system as we had hoped.

Sophie has gained weight and  has become physically stronger and her development has also taken off reaching new milestones continuously and never-ceasing to amaze us. I can say with certainty that her physical strength has helped her progress cognitively and her determination grow stronger. Her will to learn and live is stronger with each passing day.

Her health on the other hand seems to be worsening as if she is taking steps backward away from recovery. We cannot kill off the bacteria in her sinus cavities, she is not draining and her chest is full of mucous. Rocephin which was our go to antibiotic is beginning to lose its effect on her, I fear we will be left with no options in the future. We have been forced  to use antibiotics not approved for children on more than occasion after months of failed attempts to kill of bacteria, we had no choice if we wanted to save her life. We will not know the long-term effects that may come from the use of such medication for a long time.

The sinus infections are just not healing, the symptoms are worsening and the effects are draining her more and more each time. With each infection we have to use more and more medications sometimes even combining two or three different types of antibiotics and even then they do not seem to be working. When we think it’s cleared up it only takes a good week before the symptoms resurface with a vengeance. She is becoming weaker each time and the symptoms are more difficult to control.

Next month cannot come around soon enough for me so we can get the sedated CT scan done and prep for her sinus surgery. I pray this time the surgery will work, Sophie had her first sinus surgery two years ago and will now need another one. The ENT does not see improvement and urged us to intervene before the infections become uncontrollable. It is our only option to try the surgery again now that she is physically stronger to try to give her body a fighting chance. The plan is to clean out her sinuses to rid her body of all the bacteria that’s just growing in there and make sure all her nasal cavities are open so she can properly drain. It may be the best opportunity she has to allow her immune system to build up some defenses. I pray it will work, at this point I have no choice.

I worry every day, I’m afraid she will be taken from me and I don’t think I am strong enough to handle that. Science can only do so much and when they have no answers or options where do you go from there. I pray to God all day, everyday and moments like these I fear he does not hear me. I know he is present I see his miracles in her everyday but fear is powerful and threatens my faith.

This is not fair. Life is not fair. What did she ever do to deserve so much sickness. I took care of myself, I did everything by the book and yet my child was born sick. All I want is a few steps forward for her and maybe I’m being greedy wanting her health to improve, she is doing great developmentally after all, right? Wrong! I want her to be healthy because I want her to live, I want to watch her grow up and learn, and laugh, and be an aunt and experience life. I may not expect the same accomplishments from her that I would with my other children but it does not diminish all the hope and dreams I still have for her.

I just want her health to improve, that is NOT too much to ask.



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