The appointment went well. We spent about an hour with Dr. Shaik where he examined Jason, went through his history of problems and explained to me exactly what he can see and feels what is wrong. From his examination he can see that Jason has severe chordee (curvature of the penis), microphallus (small penis) and then the hypospadias (birth defect where the urethra opening isn't at the tip). So the chordee is something new to absorb for me. I knew about the hypospadias and you sort of hope when you walk into these appointments that you are going to get better news but this wasn't the case for us. Dr. Shaik explained that he would need to sedate Jason in theatre in order to thoroughly examine him and see what needs to be done. Only then will he know how easy or how complicated the surgery may be. His main concern in the urethra and this will determine the surgery. In some cases the urethra needs reconstruction as in lengthening and this will involve many operations to reconstruct, not one quick fix. BUT for now he would not do any surgery until we have seen the endocrinologist who will investigate hormone and blood tests. Jason will more than likely need a series of testosterone injections. He would like us to see the endocrinologist, see the nephrologist (kidney specialist) and take it from there. He left it in my hands as to when I would like him to do the theatre procedure to investigate but I agree after the endocrinologist an nephrologist. One step at a time.
Yesterday was an extremely emotional day for me. It's hard to explain but going back to Dr. Shaik I was prepared for the visit but what I wasn't prepared for was all the emotions involved in seeing Dr. Shaik again and being back in that area again. EVERYTHING flashed back for me, all the past of what we have been through with Jason, the doctors visits, the blood labs, the MRI's, the CT scans, driving past all the doctors rooms, thinking of all the doctors we have seen, the operations that Jason had. I was fine with Dr. Shaik but it all hit me after. I guess it's because of the long road we have been through with Jason and also the fact that we have a very long road ahead of us!! It's scary, the unknown is scary, all these doctors appointments are a LOT to take in. Bruce and I are responsible for all the decisions we make for our little man and the choices we have to make for our son are difficult choices to make. I watched my little man in the review mirror totally unaware of what future tests and procedures he has to go through and it was hard for me watching my baby and processing all this new information.
After seeing Dr. Shaik I had plans to go to my folks as it was my aunt's funeral the same day and all the family were meeting for a get together afterwards. I wasn't able to make the funeral as I needed to go to this appointment. The drive "home" all I could think about was how I would have loved to have seen my Aunty Doreen one more time as she always had the right words and always was there to console me and advise me and encourage me. I walked in my "old house" and seeing my mom, dad, all my aunties and uncles and cousins and I just burst out crying. My Aunty Doreen has always not only been there for me but also for my mom, they use to phone each other every few days and Aunty Doreen would always encourage my mom about Jason and about me and now she is gone. As my cousin Gary said "gone but not forgotten". She is now in heaven watching over us, Jason and Nicole.
Later on in the afternoon I had two missed calls from Erin (Jason's caregiver and teacher) that has been looking after Jason since we got discharged after that long hospital stay. I phoned Erin back and unfortunately she told me the news that she has been offered another job in the area which is full time and obviously more money. Hearing this devastated me. Erin was our angel that was sent to look after Jason and now she was leaving. The huge progress Jason has made since having Erin work with him has been amazing His speech has improved, his little personality has come out and his drawing and puzzle skills have totally improved. Two posts ago I was raving about how happy I am with Erin and Jason's progress and now she is leaving us in two weeks. We are going to miss our angel terribly BUT everything in life happens for a reason. That has always been my motto in life. God closes doors and always opens new doors. This chapter in our life has closed but new opportunities will present themselves. Bruce and I have already thought about what we intend on doing. We are going to send him to the little school that he was going to start at before he got sick. We are concerned about his health and his immune system and catching viruses and bacteria with him being immunodeficient BUT we think we are going to take the chance and see where it takes us. It will be good for Jason to have little friends to play with every day again. I am not sure what Dr. P will say about him returning to school. I don't think he is going to like the idea but it's something we have decided on and we will see how it goes. If it doesn't work, it doesn't work. Next year January hopefully the special needs school will open here in our home town. We are very excited about that prospect but for now we have 5 months to wait.
So yesterday was a rough day, a very emotional one. Today I felt better. I have processed all the changes and information and future plans. I am only human, I can only do one thing at a time. I cannot control what happens in the future but I can certainly go with it and do the BEST job I can do as Jason's mother. I love my little man to bits. We have a long road ahead of us - endocrinology tests, kidney function tests, reconstructive surgery and also try and get our little man eating, out of nappies and in a school that will accept him. It's a lot to process but the process has begun. We are seeing the endocrinologist on Friday, I have made that appointment and we will take it one day at a time. All these things cost, the endocrinologist appointment is R1,300 cash but we have been absolutely blessed to have a trust and blessed that many of you have helped us along the way financially and emotionally. I don't know what we would do without the funds to have all these tests and procedures done. Just this week my friend from ,the UK advised me that the fun walk/run at Gonville Academy in the UK raised R8,800.00. These funds have been deposited into the trust account for Jason's medical expenses and will be a HUGE help towards Jason's diagnostic tests. Thank you to the management, teachers, parents and of course the little kiddies that braved the cold and raised funds for our little man. And of course to my wonderful friend that has always been there for me, thank you for arranging this fundraising event and helping us with the finances. We are blessed. Also thank you to everyone that has been depositing funds and pledged a monthly deposit. Every bit adds up and helps pay for Jason's formula, his pump sets, his speech and occupational therapy and blood tests that need to be done. We have huge future expenses with these specialist blood tests and it's very comforting to know that there is funds available to help pay for some of our medical costs and therapies.
God has blessed us with the most wonderful, special children. God knew that we could look after Jason. At times he does push us to our limits but HEY he has always been by our side and he has always provided for us. He has always shown us direction and he has always provided financially for us to look after Jason. It's been a long road, we have a long road ahead of us. I am tired and feel a bit overwhelmed by everything but I will NEVER give up. Never give up, never surrender!!! Jason is such a gift to us and I will do everything in my power and strength to do the best for my little man. Just look at him, he is eating onion!!! It may be onion now but in the near future he will have a list of favorites. Watch this space!!