Time to try freedom!

Life is crazy busy. The reason I started this blog was an outlet for my mind to process my life with a darling daughter with special needs. For many reasons I have not been here but in the last year has been crazy with a huge amount of activity

 - Faith turned four.

- been out of hospital for over a year.

- gained weight. 

- become a big sister.

- taste food again for the first time in over year. It's a beginning.

- be regularly well, though those pesky UTI's are still around but better managed.

- start a support campaign to raise funds for Faith's therapy. 

- Start weekly speech therapy and continue with regular physiotherapy

The biggest moment was when Faith tried a motorised wheel chair for the first time. For a long time I lived in denial of Faith needing a wheel chair, of course, I knew she could not walk but I always hoped. Hoped for more. I still do. BUT, you know, when I saw her in this wheel chair, my heart melted. All the apprehension disappeared. For the first time in her life my little girl was independent - it was her "first steps". No longer was she a baby but a little girl longing to explore the world and see it for herself. Explore and not rely on others for everything. First, she went round and round hooray. The look of glee on her face. It sparkled like the stars. Happiness. The therapist took her out into the hallway and she took off - zooming down towards her daddy. Something beautiful seeing our little girl discovering freedom. Freedom brought on a whole new meaning. Faith as yet in unable to sit up or crawl so instead of being stuck in one pace given activities she could make choices of where she went and what she did. It brought her freedom from reliance on others.

Now we wait for another trial of the motorised wheel chair for her to again try her freedom...

Struggling with life...but as always there is a light

I wrote this three days ago but our internet was not working and I forgot to post it. 

Today has been a day I’d like to forget or even better start again. Faith has a UTI...again. She does not have a temperature or look unwell she just feels really sick in the tummy. Her tube feeds seem to equal vomit but we are getting some food into her throughout the day. I read a post at “What do you do dear?” blog and as I read it tears streamed down my face. She wrote of her struggle with ‘forever.’ I could really understand how she was feeling that day. Her son will have Spina Bifida forever. Just like Faith will have it forever. It is a subject close to my heart as lately I have been struggling with Faith having Spina Bifida forever. Right now, when I am in the thick of really bad days and tears seem to be on speed dial I wonder will the good days come again? And yes, they do appear again and I am grateful for their much anticipated arrival.

This morning was a horrible morning. Faith was unwell and I was struggling to manage. I wanted to hide but I could not. I had to face it. Making it through the day was a challenge. When we sat her in her stingray pram and took her for a stroll in the garden she smiled, she giggled. She reached out and touched the washing blowing the warm spring breeze and she touched the leaves on the hedge. She took it all in. These are the moments I hold onto when I think how can I make it through another minute? It is not my strength but God’s alone sustaining me.

Where we are at!

Time has been flying past and Faith is doing really well, she got over her last UTI after a long course of Nitrofurtoin. Her eating has increased dramatically and she is looking fatter, haven't weighed her yet but, the plan is to do that this week. Faith has more energy and is drinking more water too so that will keep her hydrated. We have increased the pure cranberry juice on the advice from the Nutritionist and she seems to like the taste now so that is really helpful. At last we are weaning Faith off her last daily medication, Keppra, it is going slowly than we originally anticipated but it going which is the main thing. By the end of March she will have no more daily medication. We have seem her more alert, saying more word sounds and interacting even more. We have also started taking Faith to swimming lessons again and had her first one of the year last week, she went all shy, it has been three months so she has probably forgotten how fun it can be. She was a cuddly koala who just wanted to watch, not play this time.

We have started back at physiotherapy and hope to be able to go weekly if we can raise the required funds. We can see so many benefits just after a few weeks. The first week we were given different leg stretches for Faith and encouraged to leave her leg wraps on for longer than we had been. So we put Faith's leg wraps on when she has her midday sleep and then for other periods during the day so around 3-4 hours in total. At our last visit, the physiotherapist could feel the tendons stretching that needed to be and said, "you have been doing the exercises". We took Faith's Squiggles standing frame along as she didn't seem that comfortable in it lately and that is because she has GROWN in length. So, we lengthened the Squiggles standing frame and she now looks so comfortable in it and we have been able to have her in it daily and Faith loves it.

Our big goal is to help Faith build up enough strength so that she can sit up and to get her to that stage we have to get her comfortable rolling side to side and practised in tummy time. The ipad is a great resource in motivating Faith to roll side to side, though I did find she likes to attempt to log into the iTunes store and archives my emails. LOL. We have managed quite easily I am happy to say to incorporate rolling and tummy time into our daily routine and with Faith being so well there has been lots of good opportunities. It is exciting seeing her strength develop and it is wonderful to have such a supportive and encouraging physiotherapist part of the team to help Faith grow and develop more. With her growing I think it is time to take the Stingray R82 pram with us next week to have it refitted as she hasn't found that very comfortable lately. Since the Squiggles standing frame needed resizing I assume the pram would too. Exciting times!

A Down Day!

I have been sitting here a while, thinking about the best way to describe my day and how I feel. Today is my down day. Faith has a UTI again, the 3rd one in not many weeks. My heart breaks to see her sad and sick. Of course we treat it with antibiotics again and they in time make her feel sick too but she is tough and we all will get through it again. I received a text from a dear friend and she encourages me to keep going. What a blessing to have such friends! 

Here is the lyrics to one of my favorite songs at the moment.

No Other Name by Emu Music
There is no other name
In heaven can be found
Through whom we are redeemed
Through whom your grace abounds
No other name can save
But Jesus Christ our Lord

Chorus
My joy in sorrow’s tears
My strength to cast out fears
No other name but Jesus, Jesus
My hope in darkest night
My broken soul’s delight
No other name but Jesus, Jesus

2. There is no victory
But Jesus crucified
No other cure for sin
But that our Saviour died
No other hope we have
But that he rose again

3. No other throne endures
No other song remains
But ‘Worthy is the Lamb
Who was for sinners slain’
When every knee shall bow
And tongue confess you are Lord,
You are Lord

A Catch Up - Tube Free

It has been a while since I blogged, I don't usually leave it this long. The reason being is life has been quite crazy for us. The wonderful aspect is Faith is still tube free and is talking more (new sounds, that I hope will turn into words soon). It is a hard road feeding Faith, she still won't take food off a spoon or through a sippy cup, she insists it has to be through a syringe. It is much better of course than through a tube but hard work as she still doesn't eat a huge amount. I have to keep reminding myself that it is thought that tube feed kids are 30% overfed so I need to remember that. I always thought Faith was overfed from the moment she was born but as she was in NICU and I didn't get a voice in that regard, I just had to trust they knew best.

I can't believe it has been only just over 4 weeks, feels like months and months. Faith no longer looks like she is losing weight which is a wonderful wonderful blessing. Her tummy is filling out very slowly. Still haven't been brave enough to weigh her as by doing so it isn't going to change anything but stress me so I will wait a bit longer. Faith currently has a UTI so she has been feeling rather unwell and it has affected her eating but she isn't vomiting and that is a big blessing. The weather here has been so hot we haven't managed to get out, hiding away in our air conditioned comfort. Don't want to take a chance with Faith getting dehydrated. I know Faith would love to get out and so would I.

What is Faith eating? She is eating her blended diet with a few supplements added and some extra fruit puree to give it a yummy taste. She seems quite happy with it. She isn't that keen on tasting new foods but we are still trying. I really hope she will soon try some other yummy food so she isn't always eating the same thing. We are treating her UTI with antibiotics and starting doing in and out catheters just while she has the infection. If we do it all the time it increases her infection rate. Faith isn't eating much when we go out so that is a area we need to work on too. But for the moment we will just keep concentrating on eating and having fun.

Day 22 - Tube Weaning - confused bubba

I found the below quote in a book I was reading today by Beverley Lewis and I wanted to share it with you.

'I am on a journey and sometimes it seems ever so long, still little by little, I'll find my way with the help of my heavenly Father. I can never go wrong by clinging to His hand'
 
Tuesday night came and we were worried Faith still hadn't eaten much, she was sleeping peacefully but still not wanting food. Was it the UTI? The antibiotic? We both went to bed in low spirits and anxious minds. Midnight came and Faith decided she wanted to eat again and she ate a lot more than usual yesterday which was great. But one big thing is that Faith seems confused with her yes and no, as sometimes when she is shaking her head answering no saying I don't want food or whatever but meaning yes so we managed to sneak a mouthful of food in and away she went eating and eating. She still struggles to eat in the afternoon. I think that is due to her rising early and then having her one and only nap from 9am - 12noon and then she gets too tired. It is a wonderful relief to see her eating again.

I wouldn't say we had a good night last night. Faith woke alot and even though I am more than happy to feed her if she is hungry, last night she just didn't know what she wanted. She would have some food and then decide no I change my mind. It was so confusing. As I knew she was hungry but couldn't get her to eat. As the night wore on we all got more grumpy and not knowing the best way to help her eat.

By morning we were looking at possiblities of what was now stopping her eating compared to yesterday. The only real change had been changing the colour of nuk sippy cup from blue to green. Surely that wouldn't be why? Anyway, this morning when I had put her back to bed and didn't know how to proceed and I said ok to her, little bug we are going to give you some food and then you can come back to bed. I picked her up and tried to put her in the stingray pram and she shook her head saying nah nah. So I said ok we will sit on the lounge then. And then she had a nice big breakfast in the blue nuk cup no green one in sight. She also had some water too. She was much more settled and I put her to bed and not long after she was asleep.

Day 20 - No NG tube - Patience

Wow, nearly 3 weeks since we took out Faith's NG tube. It feels like it has been months and months. Some good news is that Faith has slept through two night's in a row and is more happy and willing to play more. She looks better and is stronger. Faith is being her cheeky self and definitely asserting what she wants at the moment, she doesn't want food. The UTI is going to play a part in her not taking food but it doesn't make it any easier to handle her rejecting food. She is eating a very small amount but just not enough. To keep moving forward we have introduced the spoon again in the hope that soon she will move on from her spoon aversion. Feeding dolly and the puppets are part of the routine to help her learn. We have a wonderful selection of spoons and cups, all different sizes, colours and textures. 

Faith is taking her medications wonderfully at the moment, we just squirt them into her mouth and it is done. So easy! All we needed was to to trust Faith that she would take it and get used to that part of her routine and she is doing great with them. The medications taste horrible too so we are very proud of her.

We are using a visual time table and then have the pictures from the visual time table stuck around the house, the bathroom door, TV, playroom, change table, all those sort of places. I think in time it will help her communicate better but it is patience that we need right now. Patience that Faith will eat soon, patience that we can do this and patience with each other.

Day 18 - NG tube free - struggling!

Sorry it has taken me so long to come and update what is happening with Faith but my days have been a great struggle, emotionally and physically. Some days just not feeling like they will end. This is where we are up too. We have been going up and down in volume of blended diet and were progressing well and a few days a go we hit a real low where she refused food for 24hours straight. It was hard being patient but we had to, it is after all Faith's choice. With Faith's intake of food crazy to say the least we get up many times a night sometimes she will eat huge amounts other times she refuses. We have also had a trip to Brisbane to get bigger AFO's and leg wraps and also had a catch up with the speech pathologist. 

One of our biggest challenges over the last week has been getting Faith to take her medications. When she doesn't take them it does set her back and make it harder for her to move forward. As of yesterday we have solved that problem, previously we couldn't get Faith to take her medications directly into her mouth we had to disguise it in her food. Now she has decided she will take it straight out of the syringe so that is one less burden to carry and a wonderful relief knowing she is getting the right dose of gabapentin and keppra.

Another challenge we are facing as of today is that she has a UTI which explains her refusing food the last few days and her extreme irritability. It always seems to happen on the weekend. Luckily we have some antibiotics on hand just in case. At least we know what was causing it but it doesn't make it any easier when she refuses food. I just see her thin body and my heart aches and my mind struggles to keep going but knowing that she is so much better since coming off the NG tube but the process of sorting this all out it far and above harder than I imagined. Thankfully she is taking her antibiotic straight in her mouth and being very brave about it. I love when she smiles or reaches out for me, my heart leaps for joy. So, that is where we are up too, still offering and offering and doing our very best to be patient with Faith and let her get there when she is ready. She will get there it is just a bumpy ride until we do.

21 Days of Gratitude - Day 16 - 100% Blended Diet!

Wednesday
Faith is asleep and I have been wandering on the computer, writing, researching, planning and thinking. But every now and then I stop for a moment, what do I think? I am thinking about how right now everything is peaceful, all I can hear, is the oxygen concentrator, it sounds like a space ship, an alien sound to the ears but to me it is the now, the normal, laugh if you will, but it is quiet and for a moment my brain just wanders through time soaking up its own thoughts. Compared to yesterday I feel relaxed and ready to take on the challenges that lie before me.

Faith, my mum and I drove to Mullumbimby this morning, it is a 40minute trip and we drive along country roads and chat. It is a good chance to have good conversations with my mum and Faith talks every now and then but loves watching the trees go by but protests if we pass a truck or car that makes her feel threatened. Why do we make this trip, it is to see our nutritionist, the last time we saw her was in late August as she has been away. Our nutritionist is a blessing as she gives her time to us at a much reduced cost and researches areas she doesn't know about but we always seem to be on the same page, our minds seem to work in the same direction and it makes it so much easier. Faith is now on 100% blended diet but we are making to much volume in her blend so we are looking at ways to decrease it but still get the required amount of nutrition. It is so exciting to be at last on 100% blended diet. With summer already at our door step we discussed ways of keeping Faith hydrated, she is drinking water and we put water down her tube but she sweats so much with either pain, stressed, straining or just unwell. So we are thinking some electrolytes might be worth a dry. Apparently the kids version is full of not so good things so she gave me the details of a colleague who has a much more healthier version so we will see how that goes. 

 Last week in Brisbane we were discussing with the gastrointestinal doctor about probiotics and she suggested VSL#3. I looked up VSL#3 and this what I found out about it, it is a probiotic with the highest available concentration of beneficial live bacteria. Each sachet of VSL#3 contains 450 billion colony forming units (CFU) of live lactic acid bacteria which can effectively colonize the gastrointestinal tract.  It sounds really good and we need to get Faith's tummy some more friendly bacteria but it is so expensive in comparison to the other varieties so I think we will have a bit more of think about it. One of our biggest concerns at the moment is keeping Faith UTI free and it is proving a challenge. The antibiotics are killing the infection but killing the good bacteria and then when she finishes the antibiotics the infection comes back so it is quite a vicious cycle. We thought we would try cranberry juice and so I looked for it in many shops and apparently at the moment there is a shortage of cranberry juice, something we really need and we are unable to get. I ordered some on the internet so hopefully that will work out.

I am so grateful that Faith is taking to drinking water so well, she is even trying to lift the cup to her mouth and looks at it when she wants more. She is tasting small amounts of carrot, pear and apricot purees on the cup and that is wonderful progression. I am so grateful to have people like our nutritionist and speech pathologist around to help us make Faith stronger! We have so many things to be thankful for.

Feeding, we can do this!

In the past with Faith's eating orally, I am thinking about this time last year when she wasn't having anything by her NG tube, we managed to get a good rhythm going. But then Faith would get sick, a UTI or it was just her and we would back up and be back towards more tube feeding. At this point, Faith has all her nutrients through a tube via a blended diet and some energivit formula. To keep the feeding program consistent it is so important but there are little hurdles that are challenging. For example, Faith is waking at 4:30am - 5am and she appears to have an upset tummy, there is crying and she vomits and then is ok some what. I can see she is tired and not really ready to face the day but she is unable to stay in bed so her days starts and so does mine. I am glad the birds are up first.  As previously mentioned we are trying to get her to drink water orally before every tube feed or meal time and yesterday was no different. Up when the birds are singing for the sun to hurry up. Faith happily drinks water and then I give her what she can't drink down the tube. She is sweating all over this morning but sometimes, well, quite regularly she does that, that is just Faith.

After her energivit formula feed she again has a tummy ache and is still sweating, I think it is her teeth as she is grinding them a bit. We have morning tea outside on the deck and Faith sits up and watches the world go by and she drinks water and curiously watches us eat. Afternoon tea goes pretty good too except when I do her tube feed she just vomits and she sweats all over, oh, please not a UTI but it could be. I am thinking surely not we have only had a week clear and what about her feeding program we are never going to make it if she just can't stay well, panic is in my mind and fear too because it is just such well known terriorty for us.

 So I plan a BBQ for dinner where Faith can watch her dad cook yummy food and at the same time see me prepare the salad and potato bake. I am concerned sitting Faith in her pram will just make her vomit if she isn't feeling well but we have to persist. She watches the world from her mat on the deck and watches an ibis fly over. Dinner time arrives and at the table she is fine, she doesn't want the plate or food near her but is very very content sitting watching us eat with the occasional drink and we talk about our day and she is happy. After dinner we take her outside and blow bubbles as the sunsets on yet another day. We reluctantly test for a UTI but it is inconclusive so will try tomorrow, I hope it isn't, I really do! Hopefully tomorrow will be the day we can try food on her lips again and I hope she is ready for it. We are aiming to do Faith's feeding program today and then again tomorrow as need to get back into the rhythm of it. Let's hope today is the today for Faith to have a positive taste of food. Until tomorrow!

What! Another UTI!

We had several days nearly a week or more of pretty good days, not too many vomits. We made three days with no vomiting, yay for the blended diet. Faith had days where she was full of energy and just ever so bouncy and playful, it just made me want to keep playing and not doing any other household tasks but play and play and she loved it. But then a day ago she pulled her legs up and cringed, a bad pain cringe, maybe she was straining, or maybe it was something else. But that night after Faith's bath we decided to do her catheter and test for a UTI. We have found a system that works well for us and we have found it pretty reliable.

We use a multistix to test for nitrites and leukocytes. Both nitrites and leukocytes may be an indication of a UTI and in Faith it generally is. We have found with Faith her urine is clear of these when she is well and then when we suspect a UTI and have done a multistix test we send some urine off to be tested in a lab it usually is confirmed. She usually has other symptoms like the tummy pain, increased sweating on generally one side of her body but sometimes overall sweating. She doesn't seem to get a temperature since we started the blended diet, she doesn't get as much vomiting but still some. I think the blended diet eases her extreme tummy upset though it appears she still struggles with that to lesser degree. Her weight also remains stable which is blessing as last year she would just lose more weight when she got sick at least now we can maintain it.

Since it wasn't that long ago Faith had a UTI we decided to take her to the local GP and he sent some urine off and did exactly what we usually do, start her on a course of nitrofurtoin. The test results take at least 3 days so it is best to treat the UTI before it gets worse. I guess I didn't expect him to do anything different to us but it is good to have his opinion. We haven't had too much vomiting just a couple of times a day and she has been a bit sad and quiet at times but then bounces back at some point through the day to impress us with some new trick or skill she has learnt. Now we just have to wait it out until her body heals from the infection.

Just some random nattering!

What a lovely day we have had! I love spring, trees and flowers are coming to life and the air, the air is scented with so many scents, I just stand there and breath it in. I look around and happiness and peace just fills my veins. I don't want to move, just stand there absorbing it all. Faith in her pram watching me garden, rearranging pot plants, planning future plants and soaking up the warmness of the sun on hidden winter skin. Faith has a snooze and I continue my wanderings in the garden and unpacking the random box when I dare to leave the sun and fresh air. After Faith's snooze we head to Bunnings to pick up some paint and yes, some herbs and veggies for the garden. Faith lies on the blanket looking out at the ibis flying overhead and the sweet songs of the wrens and willy wag tails.

Faith hasn't been herself since the blood test yesterday, she has huge bruises on her hands and looks tired. She has been vomiting more and this concerns us, she has been sweating and quiet as usually she chats and chats. We decide to do a test to see if she has the indicators of a UTI, we haven't done a catheter for several weeks and her wee smells and it is cloudy, the test indicated that she has a UTI, poor Faith. Amidst it all she is so brave, smiling when I be silly to entertain her and waving hi and bye to her grandparents. When we lived in the other house we were stuck inside as it was too hard to get Faith outside. Now we can lie her on the rug and she can watch the dreamy clouds and the noisy Rosella's begging for food. We garden and show her seeds and plants that have delicious scents, it makes her pale face smile and giggle. Faith is so much better than usual, the blended diet keeps her from vomiting too much and helps her maintain her weight as before when she was on formula feeds entirely, she would always lose weight.

Also, we haven't seen any neuropathic pain in a long time so maybe the complex regional pain syndrome is under control which is such a blessing. Things that make Faith giggle at the moment are things like everything beginning with the letter 's', it just makes her giggle and giggle. I love it. Now, we just need to get on top of the this latest UTI. Much better than this time last year when UTI's were an ever present trouble. Now UTI's are months apart. Now to start the antibiotics! 

A Catch Up!

The last two weeks have been so crazy, the wonderful news is that we have sold our house. We are just waiting for contracts to be exchanged and this will happen this week. Selling and buying a house is huge. We negotiated for 2 days selling our house and about a day for the house we plan to buy. I really can't wait, we all can't wait. Our new house is low set and we can go outside with ease and going for a walk and playing the garden can be part of our daily routine instead of just rare activities. I am trying not to get too excited but too late, I am. Of course challenges will still be present in our lives but it will be made easier to bare. Faith's bedroom is know where near the kitchen and main living areas so we can let her sleep or rest happily without her being curious about what is going on not a few steps away from us. It is amazing what we grow grateful for, for example, the laundry is just outside the back door and Faith can come with me and help me and part of normal household activities. As with our current high set house it isn't possible for me to take Faith to the laundry I usually wash at night or when she is asleep. I tried the other day and she got excited and started poking the washing, I just couldn't manage it. Her face filled with disappointment just over going downstairs. We will miss our neighbors so much, the older couple on one side have been so wonderful to us. They are part of our lives here and I plan to include them as much as possible from our new house. After all, it isn't that far away.

Purple elephant that vibrates

So apart from pest and building inspections, signing contracts, all those fun activities with buying and selling a house Faith has been progressing really well. We have been continuing with learning makaton sign, oral alerting program and oral stimulation program. The speech pathologist made a progress sheet so we can record daily patterns, how well certain things are received and so we can make changes as we go. We have this little purple elephant that vibrates and we work up from her foot to her face to get her use to different sensations. It is supposed to help wake up muscles. Sometimes she likes it sometimes she doesn't. Our aim is to remain consistent. Just like with brushing Faith's teeth. My husband brushes his while we help Faith with hers. She gets quite excited. We are also teaching her to spit and Faith thinks it is so fascinating. I do find it a challenge to include it all in our day. I just have to keep reminding myself this effort now will help Faith in the long term. She is doing so well with it. Her new word is home and when we come into our street she says home. It is so cute and wonderful to hear and know she is understanding more.

Stepping stone clouds

Yesterday, the sun was shining and the breeze a little icy but all three of us were home so we got out the teddy bear picnic rug placed it under a tree and sat back and enjoyed the warm sun on our pale skin looking up at blue skin with stepping stone clouds. I felt my comfort level rising and just being outside, with Faith looking up into the palm trees watching the movement of the breeze through the trees, she was happy. I just want her to be happy and the simplicity of being outside made her happy. We all lay and sat out there for quite a while and it was such pleasure. 

It is nice in a way to deal with 'normal' toddler things, Faith is teething, and oh, it is not nice. Her little cheeks are read, she is drooling, the hands are in her mouth. If only she would eat and give those gums a helping chew but not as yet. A couple of nights ago from around 2am she just couldn't sleep, nothing would help, she just whined and was sad. What a long night. But isn't it a relief that it is teething and not something sinister. As it is always there as the first thought, is it a shunt malfunction or is it a UTI? In this case it is not, yay! 

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.

A UTI, blended diet and Nutrition

The last few days Faith has been waking earlier than she has been and waking sweating which hasn't made sense as the previous week everything was so much less. So this morning I thought it was time to test that Faith wasn't in a state of ketosis which has happened before and since we have removed her overnight feeds I wanted to check. Good news, no ketosis at this stage, but bad news high leucocytes and nitrites in Faith's wee, all signs that she has a UTI present. This would explain her sweating, waking earlier and some irritability. I am so surprised, I didn't expect this, she is so well during the day and she doesn't have a temperature and usually she does. 3 months UTI free and now she has one again. :( We will send a urine sample off to the laboratory this morning but will have to start her on Nitrofurtoin as the lab takes 2-3 days and she could get so sick in those days. I am sad and disappointed but at least we can treat it swiftly.

Urine sample has been sent off, my mind is racing, wrote the above yesterday and I didn't get to come back as it was so busy and intense at times. My brain is constructing letters in relation to finding and applying for finding for a standing frame and following up an appeal with the NSW government over other equipment so hence why my brain is on overload. So many things to think of. Faith had a lot vomiting in the morning but in the afternoon we thankfully didn't have any. We have found that she isn't as sick this time from the UTI, we believe that the blended diet is helping keep her tummy somewhat more settled than usual. Mornings seem to be the worst as overnight we have given her panadol and nurfen. Faith is doing pretty well, she is still playing but gets tired and restless more easily, I think we caught it early. 

My days are pretty full at the moment, I am reading and reading all about nutrition and diet so that I construct the best possible blended diet for Faith. I very excitedly received the Homemade Blended Formula book in the post yesterday and hope to do some reading today. I have nearly finished reading Complete Tubefeeding and I wanted to share a really good excerpt.

Social perception biases
'As blended diet has come a 'thing' these recent years, defined as something novel and other than the simple common sense of feeding people food, a certain fuzzy picture of a'BD-er' has begun to emerge. There is a stereotype, and as such it is far from accurate but at the moment does contain some grains of truth. BD-ers are likely to be more educated than average, especially being self-taught in all sorts of medical stuff fields. Many are parents of special needs children or carers of older people who have close personal motivations for wanting to 'get it right'. Many currently choosing BD have only 'found' it after long struggles with formula tolerance and problems and feel aggrieved that no-one told them about it sooner; this can make for some zealous words indeed. BD-ers are more likely to be the sort of person to feel empowered to disagree with their doctor's advice if it doesn't make sense to them and as such can get labelled 'difficult' or 'feisty' or something similar'.
Complete Tubefeeding by Eric Aadhaar O'Gorman


I really liked the description of a 'BD-er' as to me 'getting it right' is so important. I want what is best for my daughter and if it means speaking assertively then that is what I'll do. So many times with our trips to hospital and even clinics I feel like I am seen as the difficult mum just because I want better than best and want to know more so my husband and I can make the best decision for Faith not just asking on what we are necessarily told. I like having the full picture and all the options. It is all about being assertive and I didn't know about the blended diet until someone on a forum mentioned it and it went from there. We are still are long way off from being completely on a blended diet but we are doing it at the pace that suits Faith and even small changes to her diet we are already seeing results.

• less sweating 
• less vomiting 
• clearer skin 
• happier
• More energy

I look forward to the future and seeing what other dietary changes will make to Faith's life.

One of those days

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen" Ephesians 3:20-21

 

It has been one of those strange days when Faith is well throughout the day but we have spent so much time cleaning up vomit. What causes this? I guess it is the Arnold Chiari ii but it is always in the back of my mind, is the shunt working ok, has Faith got a UTI after weeks and weeks of being clear or is it just one of those days where she vomits a lot. There are days like that but not so often now. Every day has some vomiting in it and we have adapted to it but a day like today, I start to wonder.

We went to a church gathering and we all shared lunch together and it was really nice catching up with friends but after lunch when Faith's tube feed was finished she had a massive vomit. I tried so hard to distract her and get her focus on something else. One of those vomits I struggle to catch and it is spread everywhere. It was a rather hard situation as it hasn't really happened in such a large group of our friends before. They were so good and trying to help anyway they could. I guess they got an insight into what our life holds from day to day. Poor little Faith was trying so hard but after being sick, the environment was too loud and too many people for her. She just snuggled into my arms. We decided at that point we should just head home and give Faith a rest. At least we tried. So after coming home and Faith having a short rest she had another vomit which is 4 in a day and that is quite a lot for Faith these days.

In between we had a lovely time sitting outside watching the world go by. Faith sang at her loudest voice and laughed as I brought the washing in. Anything and everything was funny to her. I loved hearing her voice. She is getting stronger and that little double chin wrinkles when she laughs and she gives us a big toothy grin. There is nothing like a little girl singing and chatting so very loud and sounding happy. It is amazing what Faith just takes as part of her day, nothing seems to get in her way, she still keeps trying and trying. So from saying all that, it just must be one of those days.

UTI Free & Growing!

It is has taken a while but we came to the realization that our high set house is no longer practical, hubby has said that for a while but I haven't been ready. This is our first home and we renovated a bit and made it own. We decorated Faith's room and now it is all girly so to realize that it is time to move, is rather hard. We have a lovely backyard but since Faith is on oxygen and I am home by myself a lot it is too hard for Faith and I to go downstairs. We have a lovely deck but it is not the same as touching the grass and sitting outside for moment, smelling the flowers and feeling the warm sun on our backs. We want to be able to take Faith outside and when the time comes for Faith to go outside with her walking frame or whatever way she needs. To carry her and the oxygen tank up and down the stairs is quite heavy, though I am getting a lot of muscles in my arms we realize we need to move on. There are other valid reasons too, so we have put our house on the market. It isn't a good time to sell but it probably won't pick up for a long time so we just have to do it. Now starts the roller coaster ride of selling a house and keeping it neat and tidy all the time. It will be really good for Faith to go outside and smell the herbs and touch the grass and even have a slide to go up and down on.

A very exciting development is Faith has been clear of a UTI for about 3 weeks and it has to be due to us stopping catheterizing. We can see Faith changing, growing, talking more and getting stronger. She is even putting on weight! She has less vomiting but still has the other vomiting but is it better. We are heading to Brisbane for Faith to have a DMSA scan at last, the urologist said to just go ahead and get it done. Due to a nasty accident on the freeway we were stuck in traffic and we were late for our appointment but they did fit us in, it just meant we had to be there a lot longer. The radioactive ingredient that was injected into Faith before the scan had to be in her system for a few hours before they could do the scan so we just wandered around the hospital waiting. The scan was completed and the report said that Faith's kidney's looked normal so there was no scarring even with all the infections. Yay! Great news.

Faith's new AFO's

We had to head back to Brisbane the following week as due to the scan running late we missed Faith's other appointment. We were quite excited as we are picking up Faith's first AFO's. We have been waiting for these for ages, we had to wait for Faith's feet to be big enough. But here we are and Faith now has little AFO's with purple butterflies on them. Very cute. So with the AFO's and leg wraps we can stand Faith up and in a few weeks or so get her fitted for a standing frame. Faith is moving forward so much more quickly than before and it is very exciting.

Since Faith has been so well and progressing now, we thought it was now time to take her to an early intervention program. We tried once before but she was so sick that it wasn't benefiting her so we left. Our first week there were only two other babies so it was a nice small group. The week after that was the last week of the term and it was only us so we got the benefit of having a early intervention teacher and physiotherapist so that was great. We are trying to put Faith on her tummy more so she can learn to move around a bit more. We are looking forward to getting the pram soon so she has somewhere to sit and play. Having the one on one advice was helpful. The early intervention program is really good as Faith can play with other little people and we get to see a speech pathologist and physiotherapist every week. They also know about different toys that could help Faith and can help with applications for funding for equipment. It is nice to have some relatively peaceful times.

Spina Bifida Clinic

Time passes as a blur sometimes and I find it hard to define time and stages as I just keep going and going. My brain is consumed by helping Faith move forward, to gain weight, to have feeds on time, to exercise muscles, practice speech and time passes. But, I must remember my husband too and make time for him as he is my best friend and without him I couldn't do this. It is so exciting Faith hasn't been in hospital since November (3months) and that is a big achieve for us. I hope it continues. It is so nice to just have a routine. To plan and follow through. Faith is sleeping pretty well at the moment but we are still having the challenge of UTI's. Will it not end? I only know two other families whose children have spina bifida and they live a great distance away. It would be so good to communicate with others who have been through similar experiences and know the day to day struggles and be able to share life with ideas on coping and moving forward more.

We made a phone call to the urology nurse and she spoke to the urologist and he said we should catheterize more frequently. I can't see the reason in that considering when we do catheterize there is barely 10mls of wee, in my opinion I think we should be stopping catheterizing as Faith's nappies are always heavy now. We have a spina bifida clinic in a week, so we can talk to him about it then.

I am not looking forward to going to Brisbane as not only do we have spina bifida clinic, Faith is having a sleep study, neurosurgery appointments and other ones too. So it will be 3 days of appointments. And we have just discovered another UTI so we have put her on antibiotics but the vomiting has increased and when we usually go to Brisbane and have such big days Faith's vomiting increases due to stress and lack of sleep. I think sometimes the doctors and nurses forget the stress it causes on the patient and then on the families. This is an ongoing concern we struggle to communicate across to the Brisbane hospital. It is wonderful they want to keep such a close eye on her but she is well now and since we don't live locally that needs to be considered. Since Faith is still on oxygen we have to take 5 bottles of oxygen with us so we are prepared. I am finding all the extra planning stressful. I am so grateful my husband is taking time off work to come with us.

We have booked hospital accommodation and we arrive after lunch, as Faith's first appointment is the sleep study that night so we don't have to be there until 5pm. Last time Faith spent the first hours there screaming from all the cords, wires and prodding so I am feeling quite apprehensive about this one. Faith might be 19th months now but since she has a UTI she is more clingy and wanting to be left alone. She has a temperature and increased vomiting too. We had a very helpful nurse who let us give Faith a bath first but then came the preparation of all the cords and wires. She cried and cried, there was nothing that could calm her. It took quite a while for her to settle, hours actually. Around 1am an alarm went and woke her up and that was it, we spent the next two hours with Faith happily chatting, it was beautiful to hear but it is a sleep study not a talking study. Around 3-4am Faith went back to sleep until 5:30am at which point they decided to finish the study and send us back to our accommodation; hopefully to get a few hours sleep before the days appointments started. Sadly Faith still needs the oxygen and will be reviewed again in 6 months. I knew it was a possibility as Faith hadn't gained much weight but I had hoped and I will continue to hope.

When we were just about to leave to start the days appointments Faith pulled out her NG tube which of course meant we had to put it back down and run late for all our appointments. The exciting news is that the spina bifida clinic went really well and all the doctors were happy that she was starting to progress now. She did spend the entire 3 days vomiting off and on.  A couple of the highlights were no more catheterizing. We were to catheterize 1 a day for a week and if the wee continues to be in small volumes then, ready for it, no more catheterizing. Yay!!! The neurologist said that we can start really slowly weaning Faith off some more medication. She has been on so much so we are very pleased. The other exciting news was that Faith is to get AFO's, at last her feet are bigger enough. And when that all goes well we can look at a standing frame. Love the positiveness! Usually spina bifida clinic doesn't give us good news, so this is wonderful! What exciting days to come!

Finding Normality....Again!

Well, here we are, Christmas 2011, we had a well Faith and more good days. I am feeling better about life and seeing Faith progress now is very exciting. We are still struggling with Faith's weight sometimes it might increase slightly then go down, so it is sort of stagnating. It is so frustrating we are trying so hard but with all the UTI's and Faith's normal vomiting it is very difficult. I talk to the Brisbane dietitian once a week and she offers advice. We met some family at a park the other day and one of them was wearing a hat and Faith said hat, very cute, a new word. Faith waves, says hi and hello and loves when we say dancing hands as that is what she does. One of Faith's favorite past times is reading. She spends so much time turning the pages, looking at the pictures and touching the books. Another really exciting development is when we say 'roll' to Faith she will turn the upper half of her body and we just give her a hand with her leg and she rolls to her side. YAY! Very exciting! We are getting out more and having fun days. I feel like we are just starting to live again.

We are still having problems with UTI's 1-3 times a month but we can treat them now without going into hospital. We seem to have more control of our lives and it feels good. We have tests strips so we can see whether Faith has a UTI and then we can start treating it while we wait the few days for the lab results to come back. UTI's give Faith increased vomiting, restless overnight, and high temperatures. We have found a local pediatrician and he is a good help to us. Due to all the UTI's Faith has had the urologists wants her to have a DMSA scan but the problem has been Faith has to be clear of a UTI for 12 weeks and that hasn't happened so we just keep rescheduling the appointment. At this point I can't see how we are ever going to be clear for 12 weeks. We have an upcoming appointment with the urologist so we will talk to him about it then.

Faith is texture sensitive not only to any new foods but objects and just exploring the world. It is quite a long process and we have to try and include a variety of objects that have textures so she can learn about them. Faith has little leg wraps now and we can see that they are helping keep her legs out straight as before she kept them like a coat hanger. As she always had her legs pulled up when she was in pain and now is it is what she is used to doing. At this point Faith is still unable to sit up and we struggle to find good seating positions for her. We applied for a pram and it has body support so she can sit straight and supports her head better but still allows for her to develop her head control. The pram comes with tray so she could play with her hands more but we haven't heard back about how our application is going with NSW Health.

Even though Faith still gets sick from UTI's and we still have bad days our good days are starting to outnumber the bad. This is so new to us and it is WONDERFUL! Faith and I have been going on play dates and it is really positive for Faith to learn about other kids as she really hasn't had the opportunity to do so before. It is fun to do something 'normal'. It has been good for me to interact with other mum's and not feel so isolated. As a family we have been going for walks together and even going out for a few hours for a trip. We pack up the oxygen and all the NG feeding things and head out. It is getting easier and we are adapting to doing a variety of tasks out and about. I know for me there came a point when I truly accepted that my life is different to what I dreamed of and that embracing this new life and discovering the beauty in it. I am not saying that it is easy, it is hard and I do have bad days but every step forward is so much more appreciated and noticed. By me not only accepting my situation I am helping Faith accept her life with special needs and allowing her to be confident and ready to take on the world. I want to give her everything that is possible and give her just as many wonderful and exciting experiences as she would have had had things been slightly different. There really is happiness for the 3 of us, but in saying that I still get quite emotional at times and find my world hard to handle and want more for my little one. But that is natural. Faith is a blessing to us. We are finding our own normality....again!

Oxygen, NG Tube Feeds and UTI's

We are home! We seem to be surrounded by cords, oxygen and now an NG tube. I try not to think about our situation too much as I start thinking about 'what ifs' and what things could have been like, the way I imagined it to be, but then I remember our beautiful blessing of Faith. God never gives us challenges we are unable to bare though I find that concept hard to fathom at times. Faith is talking a lot more and I love listening to her babble. Mama and dada are common words and my heart leaps when I hear them. I look forward to when she can tell us what is going on.

We have tried a couple of times to wean her off the gabapentin particularly when we have a good week but it usually backfires as she isn't ready and makes her symptoms worse. The doctors wanted us to try. So we decide just to leave it until she is more stable. UTI's are an ever present trouble and we have just about a week well and Faith gets another UTI. We can't seem to get them to stay away. Taking a daily antibiotic isn't an option as Faith has resistance to them and we need to have one of them that can treat the UTI. The best antibiotic for her UTI's seem to be nitrofurantoin, not even the IV antibiotics seem to work now.

We have had a few more trips to the Brisbane hospital with recurrent UTI's and Faith's seizure medications being reassessed. We are getting so tired of living away from home and not being able to enjoy Faith and her not being about to enjoy life. The vomiting has reached a new level, its uncontrollable. We take a chance and take Faith off the formula and NG feeds completely and put her onto pureed solids as she is doing so well at them now. After a few days of the solids she has started sleeping through the night which is a first, she is usually so restless and up and down through the night. Amazing! Loving the extra sleep. The gagging and vomiting has virtually disappeared and she is well.

At the end of November 2011 Faith has been booked in to for another MRI as before we took her off the formula the neurosurgeons wanted to see if the syrinx had returned and if that was contributing. Since she has been well, we really didn't want to have it done as her feeding is so delicate we didn't want to lose how well she was doing but we thought we better. The day of the MRI the doctors had a really hard time getting the drip in and in the end they inserted one in her head. I dislike this as it is near her shunt and it makes me so uncomfortable but we needed to get it done. The MRI report showed that the syrinx had collapsed, this is amazing as they thought this wouldn't happen. So having the MRI was good in that respect.

Unfortunately there was quite a negative aspect to the scan as from that day forward Faith's eating deteriorated. First, the speech pathologist thought it was just a sore throat from the tube used in the anesthetic, so we started blending the food and putting it down her tube and continued trying to get her to eat solids but no success. Another challenge we came against was when we were testing Faith's wee for a UTI we noticed her ketones were extremely high and this started happening after feeds too. Faith's body was in a state of ketosis. We got an urgent appointment with a metabolic specialist in Brisbane. Faith had lost 1kg in a month this was not good. Tests were done to see what was going on and it appears it was due to her change in foods and not getting enough energy so we were given a formula without protein in it - energivit. She seem to tolerate this well and we could see her getting stronger and less overall vomiting but we started getting this horrible vomiting and sweats in the morning. If only Faith was still eating solids.

Life is improving and we are starting to have more good days. Vomiting just in the morning is more bearable than vomiting all day so we are managing it ok. Christmas is approaching and we are excited that Faith might be well. I think our life is starting to change for the better.