E Coli is a bacteria which is commonly found in the stomach. Most strains are harmless but some can cause serious food poisoning and E Coli in other parts of the body besides the stomach is concerning. E Coli in the urine isn't very common. It does concern me that Jason does get these urinary tract infections quite often. His kidneys are a big worry for me and although we have done tests to rule out reflux of the bladder, Bruce and myself weren't convinced with the test and results. This is something I will discuss with the surgeon for when Jason has his urology operation. The repeat urine test on the Friday revealed that the E Coli was gone so that was good news.
Good news was that the protein creatinine ratio has come down from 1.21 to 0.60. This is still high and not normal but good news that it has come down.
On the 15th September we had our final endocrinologist appointment. Jason has had three testosterone injections to prepare him for his upcoming urology surgery to correct the severe chordee and hypospadias. The endocrinologist is pleased with the results and Jason is now ready for surgery. I knew this day was coming but a part of me kept putting it off in my mind knowing that we still had more injections. We are ready now and it's time to call the surgeon. Another huge step in Jason's journey. Something we are not looking forward to but something that needs to be done. The endocrinologist is happy with things. He is happy with the changes since before the first testosterone injection. We will need to see him again when Jason hits puberty (around 13) to make sure that his body is producing it's own hormones. If not we will need to have more hormone treatment. Such big things to think about at such a little age.
The 16th September is quite a historic day for us. On the 16th September 2008 at the age of 15 months Jason had his Nissan Fundoplication and tube placement. On the 16th September 2010 was the day we left for Austria to go to No Tube for Jason's first tube wean attempt. This year was quite different. On the 16th September 2014 nothing historic happened but every 16 September I look back at the past. This year was different. I did look back at the past as I always do but this year I looked at our future. I looked at how far Jason has come, how many obstacles have been in his way and I looked at how bright our future is going to be. I look at Jason and I couldn't be prouder. It has been 6 years with a feeding tube and 4 years of trying to wean him off that tube but this year he has done amazing things. He is willing to taste things, he is eating all his food orally during the day now, taking all his medication orally and we only use the feeding tube at night for weight gain. It's just a matter of time and I am one patient lady :-). Jason has come along in leaps and bounds. He hasn't just had a feeding issue to deal with, he has combined primary immunodeficiency, chronic kidney disease, hypospadias and severe chordee, suspected mitochondrial disease and dysautonomia. All these issues have been a part of Jason's journey when I started his journey and that was to go to Austria to tube wean him. None of these issues he has did we know he had them then. Tube weaning was just the start of his journey and this journey has become something SO much bigger. We are discovering new things every day. It has been quite a journey for all of us but looking back wow God has been so amazing and never left our side. Bruce and myself dedicated a song to Jason shortly after he was born and in neonatal ICU. It's a song that has stuck with us and a song that is so appropriate for Jason and for us. The song is called "End of the line" by The Traveling Wilburys. The first verse goes like this .... "Well it's all right, riding around in the breeze, Well it's all right, if you live the life you please, Well it's all right, doing the best you can, Well it's all right, as long as you lend a hand. You can sit around and wait for the phone to ring (End of the Line), Waiting for someone to tell you everything (End of the Line). Sit around and wonder what tomorrow will bring (End of the Line). Maybe a diamond ring.
That song is true to life no matter what situation you are in. I have learnt over the years how tough life is. Nothing goes as expected, nothing goes smooth sailing. We don't know what our future is but we DO know what our past has been and our past can teach us valuable lessons. Bruce and myself have learnt so much through our hardships. Jason has taught us so much in life. He has taught us to appreciate every single day we have with him and Nicole. He has taught us the value of marriage, the value of loving each other no matter how hard life is. Life really isn't easy. You are hit with curveballs all the time but it's how you handle those curveballs that matter. I have learnt that today could be a really great day and then I wake up in the morning and all has changed, tomorrow could be a difficult day or visa versa. BUT I have learnt that no matter what we go through God is with us every step of the way. We have one true friend that NEVER leaves our side and that is God. On bad days I hang onto my faith and trust that God will see us through it and he does. I think about our little man lying there in his bed now attached to a feeding pump and being fed while he is sleeping. That little boy, our superhero God gave him to us for a reason. Not because I am any better than anyone else and have super powers to look after a special needs child but God gave him to us to complete us, to complete our life. I would not be the person I am today had it not been for Jason and Nicole. I am a better person because of my children and my husband who is always by my side. I love my family very much and thank God every day for them.
Jason is doing so well with his eating. He has suddenly taken off. The feeding therapy is helping HUGE. The oral stimulation and desensitising massage Sarah does with Jason has been a huge part of him turning the corner, a huge part of helping him to eat better but not only eating, just everything. He is eating all his food orally during the day. Yoghurt and honey, banana, we have now introduced soups and stews and he is doing amazing. His speech is improving great as well and his energy levels and little personality has really changed over the past few weeks. We couldn't be prouder of him. Our one challenge at the moment is still the diarrhea. What goes in still comes out. He isn't absorbing his food. The doctors call it malabsorption but unfortunately we don't have too much of a solution for it besides immodium. Some foods have a worse reaction than others and it's all about trial and error. With the diarrhea comes the raw bum burns and the not being able to toilet train. BUT again baby steps and one day at a time. We just go with the flow, keep a record of what he is eating and continue to try new things, continue to try and toilet train. NEVER give up, never surrender. Just keep swimming :-)
As usual I have gone on and on. When I write my blog updates I just type what is going on in my head. I don't edit it at all. I just let my thoughts and feelings flow. I don't look for pity or want people to tell me what a great mother I am etc. I just write what is going on in our life and how I feel. I don't really keep it going for any particular person but myself. When I started this website 4 and a half years ago I didn't realize I would still have it going. I keep it going because I enjoy it. I keep it going because it is my record of our journey together as a family. I keep it going because if it can help one or two people going through similar circumstances bonus! I keep it going because I still have so many followers that are following Jason's journey and continue to check for updates. I keep it going because Jason's journey was all about Jason's journey to eat. When he gets there, when his feeding tube is eventually removed I may just stop but I think I will miss it. My dream one day is to have a book called Jason's journey. I do believe it would help a lot of families going through similar circumstances but until then this website will continue :-).