Spina Bifida Clinic & finding some more amazing help!

Beautiful old trees in the hospital grounds

So much has been happening lately it is hard to know where to begin. I have missed blogging but I have written so many in my head at night, if only I could just print them out. We had a two day planned trip to Brisbane for spina bifida and metabolic clinic. The first exciting news is that Faith has been discharged from the metabolic clinic so this means that she has no metabolic or genetic disorders so we don't have to continue to attend this clinic. Exciting, one less appointment and clinic. Faith's appointment's are decreasing, the specialists have said that she doesn't have to come back for 6months and they are happy that she is progressing and developing. Yay! I love when specialists say 'good good good'.

Usually Faith spends most of the trip vomiting as she can't cope but this time she coped so much better only a couple of vomits. Our first visit using the blended diet so I think that was a big part of why she vomited less. We actually had quite a nice time away with being able to take a walk to Southbank in a between appointments one day and wander through the luscious gardens and enjoy a yummy meal at restaurant we have been visiting since I was pregnant.  Each time we go we talk to the owner and he remembers our journey and he shares his with us. So that is always nice.

We are still continuing with the blended diet, ever so slow that Faith's body adjusts and we don't see any weight reduction. Faith had lost weight over the month (200grams) and since she had had increased vomiting and a UTI, we put it down to that. BUT, it had been a week since we last weighed her and we had been adjusting the blended recipes and adding more protein and increasing the volumes too and she gained 100grams!!!! Yay! She has also got longer and she looks much more well with little rosy cheeks and her cute double chin, so encouraging to see. Our last appointment was with the gastroenterologist and she is trying so hard to figure out the vomiting so we mentioned to her that Faith is in the early stages of a blended diet and she said that if that is what is working for Faith then keep going with it. I am so relieved I didn't think she would support our decision but she did and answered all our questions and said if there is anything she can help with to let her know and to come back in 6months. Such good news! Her only request is that we have a local nutritionist or dietitian to support us.That is another story for another blog.

But I must say the BIGGEST blessing to my husband, Faith and I was our visit to the Spina Bifida Association. With Faith still on tube feeds and she still isn't eating orally we just don't know how to get past the food aversion road block so, who I think is the most amazing speech pathologist said that she would work with us from Brisbane to help get Faith on the road to eating again. I know it will be a slow process but it is a start. She is going to help us start from the beginning and is working out a plan in stages so we all have goals and instructions and a structured plan. This is just so so amazing as for a while now I have had all these ideas, processes, and suggestions floating around my brain and I have not known how to sort them in to a structure to help Faith move forward with her eating. She is going to create a program that can she can run from Brisbane and support us over the net and phone. At last there is a plan something my brain got sort through and my husband and I know what we need to do to help Faith with and what activities are beneficial and in some sort of order. The speech pathologist has given us activities to work on with Faith, books and handouts to read. What a blessing, how do you thank someone like this, I just want to do something to say a BIG thank you and show how much her help, support and guidance brought us direction and more hope. So we came home feeling excited about learning Makaton sign and teaching Faith, learning about the PODD communication system and how it can help her develop and communicate and starting a approach to feeding that will help us work towards, no ng tube.  More about these things later. It is exciting to see how we are moving forward and how Faith is growing and developing.