The Serenity Prayer

As I think of this time yesterday and how sick Faith was, I am so grateful for today. Yesterday I felt so overwhelmed and stretched and I was reminded of the Serenity Prayer and it encouraged me.  I know at times we would like our life slightly different and I know that I can make some changes but some aspects cannot be changed but I can find happiness and contentment in my life I just need to know where to look.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

--Reinhold Niebuhr

Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.

Proverbs 3: 5-6

New Formula, not fun!

Do you ever feel that when it rains it resembles your own tears? I do, today as I see the rain fall I feel like that is my tears pouring out. My heart hurts when I see my little girl sick. I see flashbacks of past events and hours, days, weeks and months of pain for her and us. I am afraid of what might come and of what the future may be, I just hope and pray that is not where we are heading. Not yet, not ever. This is what happened, at last we tracked down some tins of Neocate Advance and decided we would give it to Faith. The last couple of days Faith hasn't vomited as much but still a lot and we haven't got everything ready to give the blended diet ago though we are keen to start. Faith had been awake since 4am, oh so tired. She just moaned and complained with silent patches every now and then, but by 6am I got up and she was ok, just glad to see someone. Faith was wet all over from sweat and after some distraction, a smile and chat came forth. But that is what most mornings are like as she recovers or vomits. 

We usually give Faith zymil milk for the protein but this morning we were going to try Neocate Advance, after the first 50mls we stopped the feed just to see how she was going. So far so good and we restarted the feed about 45mintues later. What a disaster, she started sweating, pulling up her legs and she was really tense. We could tell it was tummy pain. We finished the feed as it wasn't far off being finished. After a short rest, a large vomit came and that the was the decider no more Neocate Advance. Our cheerful happy baby that we had yesterday was now a still, sad baby with an occasional forced smile. She didn't want to interact just lie there not moving much.

I know we all have bad days but Faith's bad days are so much harder since we have only had the last few months with her well... ever. I was hoping so much that this formula would work not make her feel worse. Finding a balance with formula is so tricky. I was reluctant to to try this formula as I didn't think it would fix the problem but I didn't think the effect would be this. To see her lying there all still, wet all over from sweat and with her legs pulled up was horrible, all because of a formula change. We gave her some panadol and it seem to help a little bit. She is now better than she was a few hours ago, probably good she had a vomit to get it out.

After several hours since her feed we decided to start another feed this time of energivit as it doesn't make her that sick. She is asleep, hopefully sleeping off the ill effects of the Neocate Advance. I must admit I am really looking forward to starting the blended diet. We are trying to organise the vitamix blender and waiting for a couple of books to arrive so we can make sure Faith is getting the right amount of calories and nutrients. As write I hear Faith wake and she puts her arms up to me and starts her babble. We stand at the window and she touches the blinds and chats light light and touches my face. She seems so much better. She still isn't her 'normal' self but she is better than hours before. 

Evening has approached though cold, raining and windy but Faith is a lot better. The formula gave her a green tongue and she had her 'normal' afternoon vomit but she is talking and lying on the floor playing with the vertical blind. She has been playing and chatting which is much better so we can see she is just about over the formula from this morning. She is worn out but getting better. Hopefully, tomorrow will be peaceful and quiet and we can all recover from today.

Learning about a blended diet

It is so hard to know what is the right diet to give your child, there is so much advice on what is best, what will help my child grow, it will do this and that. Formula offers a complete solution where calories are controlled and a specific quota is allocated and we aim for that. But I miss Faith having the real food, making cookies for example or going out together and having fun out eating but our aim is to get her back onto real food. She was so much better when she was on purees, there was no vomiting or nausea. When Faith ate pureed foods recently she developed a food aversion so now it all goes down her NG tube. So we started looking at what was out there for us. In our situation there doesn't seem to be many options. We have tried infatrini, nutrini, the main stream formula's, pepti junior and our current formula energivit and it seems to be the best of all so far. We give Faith a combination of energivit and zymil milk, the protein component. We have food play and let's eat food sessions each day and so far she lets me put a tiny bit into her mouth happily so that is a great success. But Faith still vomits and there are days which are a lot at the moment, I spend my time attempting to distract her from rubbing her face which makes her possibly vomit because she wriggles the NG tube and oxygen prongs. Then someone on a forum suggested a blended diet.

Firstly, what is a blended diet, the idea is to put a home-cooked meal through the blender, strain it, and then ingest it through the tube.  From what I have read blenderized food can be cheaper than formula unless you are purchasing a special supplement to go in the mix. It can be commercial formula with a small amount of baby food added or vegetable added or blended meals throughout the day with commercial formula at night. There are so many options of working it. My thoughts is it would have to be more appealing as with being able to taste the food through smelling and even burping. It would have to be better than formula particularly if it is vomited up as formula's can taste so bad, but I guess that would have its negatives too. 

When I have spoken to some Australian health professionals about a blended diet they have said that it may not provide all the vitamins, minerals, fibre, hydration, and calories Faith needs. Some don't know much about it and are interested to learn more where others don't want to know as it isn't an option in their work. Also, a big concern was blended food may clog Faith's NG tube and need to be replaced more regularly. I can completely understand there reasoning's but if it can reduce or get rid of all Faith's vomiting I can see the benefit. She would be so much happier, as the vomiting and nausea takes so much out of her. When she has less vomiting, she develops at a better pace and gets stronger, she is more interested in food and drink and wishes to play more. It has to better than cleaning up vomit where ever we go. We are not looking at getting a G-tube yet as the plan is to get Faith back onto purees.

Of course we are considering that making the transition to a blended diet is slow as we need to rule out allergies and in tolerance. From what we have read off various websites and other families experiences to start the blended diet we add a small amount of baby food each day and work from there to making our own blended diet. I am finding learning more about nutrition very beneficial even now when we have started yet. I think it is a very exciting time as this could be a good balance between formula and a blended diet.I have been looking around for information in Australia about blended diets and haven't had much success so far but have found some helpful information in the US and it has all been so positive.

I have been looking into what type of blender to use and it seems that an industrial type blender purees the flood small enough so that it go easily go down a tube. I have looked into the Vitamix blender and in Australia they offer a medical discount like in the US so that is great. Most people put the blended diet through a G-tube as there is more room than in an NG tube, but I read read about families putting a blended diet down a NG tube, just have to be more creative. At this stage it won't be all her food anyway, it will only be a small amount. If it is better for Faith then it is worth trying. I read a story about a lady whose son became 'more interested in food through a blended diet and there seems to be so many success stories. It is hard to know where to start and where to get these recipes. I ordered a book called Super Nutrition for Babies: The Right Way to Feed Your Baby for Optimal Health and it seems to be very helpful in regards to nutrition and homemade formula. I found out about it on a forum, nothing like a recommendation from someone else. I have also been to the website Mealtime Notions and it seems to be a very useful, informative and a helpful site. They have also advertised a book of a blended diet and I hope to purchase the book if they will ship to Australia. Faith has had such a hard time gaining weight so we will be extremely careful.

Link to sites that I have found informative

Oley Foundation

Mealtime Notions

Sorting out a new diet

It's raining outside today and it is one of the those kind of days to snuggle up on the lounge and watch a movie. It is peaceful in our home at the moment. Faith is at last asleep after more vomiting that usual. She awoke very early as I think she was feeling unwell in her tummy. She has had increased vomiting now for 6 days and I see the weariness in her eyes, it is tiring her. 5 vomits today at least, she is trying to play and be her happy self but I can see she feels sore and is over all the vomiting. When she went to sleep I gave her a big tube feed so we can get back some of the calories that we lost. I love standing at the end of her bed watching her breathe and move her hand to make sure she is touching her teddy with the pink bow and then when she stretchers out her legs and all is still while she sleeps ever so peacefully.

On Wednesday we drove to Brisbane for our long awaited appointment with the gastroenterologist. Our appointment wasn't too early this time so the trip in the car was a lot more pleasant with Faith saying car car car every now and then and she sat back and watched the world go by. She wasn't into the trucks going past and let out a little squeal of protest. On arrival at the hospital she had a huge vomit in the waiting room that was bustling with people. We thankfully only had to wait 15mintues and got in to see the doctor. She thought it was better to take a cautious approach with the vomiting and rule out food allergies before doing any invasive procedures which I was grateful for. She wants to start Faith on Neocate LCP but after some research when we got home and talking to the metabolic dietitian we came to the conclusion that Neocate LCP wasn't going to give Faith enough calories as she needs a lot for catch up growth. So I rang our doctor and got a script for Neocate Advance. I am quite nervous about putting her a different formula as this one has protein added and up until now we have been protein restricted just in case that was what was causing Faith's vomiting. I think that it is just formula in general that is causing her vomiting but we have to keep trying.

I have heard through various forums that a blended diet can reduce or even in some cases get rid of vomiting. This makes so much sense to me as when we were stuck last year without a formula we blended food and put it down her tube and during that time we had none or very little vomiting and gagging. When I talk to some professionals about this they are very apprehensive and not really into it but I really do believe that it could help Faith. It has to be worth a try. I was told about a book called Super Nutrition for Babies: The Right Way to Feed Your Baby for Optimal Health. I looked at it on Amazon and it looks like a fantastic book on learning about nutrition so I ordered it. I also read that having the right blender is also important so I have been doing some research into that too. After all the vomiting we have had the last week, I couldn't bare her losing weight and seeing the little ribs show, then I know that she needs more food but we are not at that point thankfully. It is so tricky trying to figure out the right balance. 

The plan it to try Neocate Advance and slowly introduce a blended diet as well. We need to be continually looking at how we stop Faith's vomiting and after trying so many formulas in the past I really find it hard to believe that this one is going to work but it is worth a try since Faith's vomiting has increased. She is just getting enough formula as we increased the overnight feeds so at least we can do that to help. Even with the vomiting we seem to be heading in the right direction with her eating. Each morning I give Faith her bowl and I have my bowl and as I eat my cereal I eat some of hers and show Faith how and usually I get a smile and yesterday and today she nodded at me and I put some rice cereal on my finger and into her mouth. Very exciting. Slow but steady. I am not sure whether to be introducing the spoon again as she dislikes it so much, so for now it is my finger and other interesting food products that she will not reject.

Every day in our house has is our own adventure, whether it be cleaning up vomit, making numerous calls to organise deliveries, making shapes in play dough, watching the breeze in the trees or just thinking of new ways to make Faith's day interesting. Some days she sleeps more particularly after a long trip to Brisbane so we just take each moment as it comes and try to adjust to the continual change but we are moving forward and that is the important thing.

A success with the hands!

Each day we do lots of activities with Faith to encourage her to use her hands more. She can now wave her arms in the air, do dancing hands, play hands and shoulders, open shut them, hi five and wave so there is a lot she can do. But the whole concept of grasping is hard. She does so well at grasping the stacker cups and pulling them out individually and if we hold the cups she can put them back in. She can also have the cups on her hands and then clap them, very cute! But to stack cups or blocks on top of each other or pick up the shapeo shapes and put them in the shapeo is just to hard for her at the moment.

On Friday I was feeling down about Faith's sensitivity to food and I was thinking how I wanted her to move more quickly as I really want her to be able to enjoy food. Then, there in front of me, she picked up the little squares of play dough I had made and started dropping them over the edge of her tray. She even managed to drop a few in my hair when I was picking them up off the floor. How exciting. Faith hadn't grasped much before so this is wonderful. She didn't do much grasping over the next few days until on Monday when we went to early intervention and she went for it. She grabbed at little blocks, stars, little balls, anything that was a good size for her tiny porcelain hands. Just seeing those tiny hands grasp a tissue and be entertained by moving her wrist up and down and watching the tissue move with ease in hand. A breakthrough. She even put the tissue to her mouth to suck on and tried wiping her nose with it. A simple entertainment of a tissue.

Then yesterday Faith started picking up the shapeo shapes by two and dropping them over the edge of her tray. She found this very entertaining. We just need to keep up the practice and encouraging her to keep grabbing and wanting to explore. Another exciting event was when Faith started chucking the small coloured wire ball around. Faith's days are so much more fun since she can do more with her hands. All this amazing progress seems to be since we got her new pram, the stingray R82 as it has a tray and she can sit up and play. Such a blessing. As I go around the house doing things Faith comes with me and can see what I am doing and laughs, plays and feels part of the activity.

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.

Eating is meant to be fun!

We met with our local speech therapist this week and she thinks that it would be a good time to start offering food again. We have had a break from offering food and have been sharing whatever food we are eating with Faith. We have been allowing her to play with it, poke it, push it, whatever she likes to try and get her used to food and learn that food is a friend not a foe. She hasn't grasped any food yet but she has had chocolate, Vegemite and yogurt on her fingers and some of it has made it to her mouth to taste. She has been taking little sips of water on occasions but not much as she just shakes her head. Faith needs to learn to hold onto a little bit of food and put it to her mouth but she first needs to learn how to grasp better. Faith can grasp her stacker cups, she pulls them out and if we hold a cup she can put the smaller cup back in the bigger cup. She is much better than she used to be, but it is a very slow process. Faith has definitely improved since we got the Stingray R82 pram, the tray on the pram gives her more opportunity to explore what is in front of her. Before Faith would spend so much time lying on the floor or sitting on the lounge and now she sits up her pram surveying the world and taking it all in.

Since we have been a little stuck for a food routine and with Faith's eating the speech therapist thought maybe starting a more definite food routine might help. Some ideas were

Breakfast

• cereal 
• strip of toast
• a small chunk of banana

 Lunch

• Strips of avocado
• cruskit biscuits
• pieces of soft cheese
• well steamed vegetables
• scrambled egg

Other ideas were 

• continue to offer water from the sippy cup (we have always been doing this) but we could try using a different colour sippy cup with either juice or flavored milk.
• continue with oral play to encourage Faith to put toys to her mouth
• keeping the same food for a few days so she has a chance to become familiar with them.  

We are happy to try anything and give all ideas a go. One of the ideas to offer a bowl of cereal when we have our cereal is worth a go, it would be good to try and break the current morning routine. It is so tricky in the morning as Faith usually vomits first thing or if not then shortly after we give her her zymil milk, we have tried different combinations and nothing seems to stop the vomiting. The last few mornings I have tried offering the rice cereal (as she is still on pureed food) and she either shakes her head, buries her head in her shoulder and starts moaning. On Thursday I tried all day offering food and playing with food but with no luck. In the afternoon Faith had a huge vomit and I was so discouraged. After an hour or so, I thought she must be so hungry so I offered her some pureed food and not only did she gag, she had another big vomit. I felt like such a failure, we just don't seem to be getting anyway.

On Friday it was pretty much the same, then came Saturday and no progress again. I have only just recently came across the babycenter forum for spina bifida and it is amazing, at last I have found a group of people who are experiencing the similar changes and have such encouragement and advice. It means so much and even reading the other posts are helpful. It is good to have a forum that I can go to for help but in some circumstances relay my experiences in the hope our experience might help or encourage someone else. Now, it is Sunday and early this morning we did have a tiny break through. I gave Faith her bowl of rice cereal, I tasted some and I ate my toast while playing with her food. I chose a rice cereal with no taste I thought why not try going right back to basics. I didn't offer her any with her spoon, as spoons don't seem to help right now, so I rubbed some rice cereal on her lips, I didn't make a fuss just kept eating my toast and she started making chewing sounds. She didn't gag, didn't vomit. Faith ate the tiniest bit of cereal. Wow! I hope this is the beginning of eating even if slow. I wanted to try more but thought better not and instead gave her little sips of water. Success! 

Mother's Day

Mother and daughter project

Faith decided that we should definitely be up early so she awoke around 5am, way to early for me but not for her. The sun hadn't even peeked its head up and the street lights were still on. Home is a wonderful place. Home is defined as the place where one lives permanently, esp. as a member of a family or household. But to me a home is where I am with the people I care about and a place I can hide away, feel safe and a place where I am loved. A sanctuary! So when the early winter sun did decide to peek its head up and warm my cold toes. We saw the beginning of a new day. I know it is like any other day but it feels a tad more special being Mother's Day. This year we are home! Not in a hospital but home together as a family. I like this.

When the early morning mist has turned to warm sun, we make our way out onto the deck to bathe in the sun and do some drawing together. Faith is still unable to grab a crayon but each day we get out the crayons and paper and we draw, I put her little dimpled fingers around the crayon and scribble. She smiles and sometimes gives me a chuckle of enjoyment other days she pulls her hand away. She can be so texture sensitive sometimes. Today she smiles and we do an outline of each hand and make a drawing for Granny. We have also made a hand painting. A printed tree and her hand prints are the branches. Very cute! I did the colouring and Faith did the hand prints. A great treasure to have.

I love these quiet days when there is not much on and we can all cruise around home not doing much. We spend much of the day outside on the deck enjoying this beautiful early winter days weather. I get to see my mum, giving her Faith's drawing and a little pressie from me. It is good sometimes to be forced to remember aspects of our life that we are thankful for. As sickness or just busyness can overtake life and special days like today we are forced to stop and a take a moment. I am very thankful for my mum and hope to be just as good mum and friend as she is to me. Though our day still has Faith's 'normal' vomiting we adapt and the sun goes down on a clear blue sky and the crisp air arrives and I realised that this Sunday has been peaceful and I love it.

A Year of Oxygen

When I woke this morning I must admit that my mind floated back to 12months ago when Faith, my husband and I were in Brisbane thinking we could be here for weeks all because of cross border political red tape in acquiring an oxygen concentrator. I had mixed feelings and thoughts. I could picture not just the room with a cross hanging above the door that Faith was in but the other people that were there. It was like my mind was replaying a story in my head all the while I went on my daily activities. I felt like I was in two worlds, trapped in the present and the past. This seems to happen more when I can easily identify a date related to this time. It was a couple of days before Mother's Day 2011 and now it is around the same time but in 2012. We came to the hospital free of cords and the freedom to move around and we left with a supply of nasal prongs, tape and oxygen bottles. The little face I love now obscured by plastic nasal prongs and a heavy bottle on my shoulder. She is still just as perfect though :) I know this is a positive step in its on own way. Two days after we started the oxygen Faith started talking and saying words, she no longer breathed so deeply and there was no huge dent in her chest when she breathed. All this change over .25 of a litre, such a small amount of oxygen to make such a huge difference. I did feel safer with Faith on oxygen as now her oxygen saturation didn't drop so she was more stable. Faith has no respiratory problems it is all related to the Arnold Chiari ii malformation.

I don't know if other families struggle with doctor's not fully understanding Arnold Chiari ii, but we do. I can see why Faith doesn't progress in some areas and it is because of the Arnold Chiari ii. I don't understand why the doctor's cannot see this, one doctor said to me the other day that Arnold Chiari is just part of spina bifida, true in some cases, but Faith's is symptomatic. For us, if Faith didn't have symptomatic Arnold Chiari she most likely wouldn't have developed syringomyelia and Faith wouldn't have had so many challenges. It just frustrates me sometimes when doctor's fail to see or just can't. Our neurologist and neurosurgeons understand it because not only have they physically seen it in Faith they have seen it in the multiple MRI scans. But I digress, I think my brain needs a print off function so that when I have lots to say I can print off the emotions, frustrations and feelings. It usually happens late at night and then if I could print it off I could then refer to it later or recount ideas I had during the dark hours of the night. I am always thinking of ways to help Faith progress further to grow and prosper.

Joys of our garden

With a year of oxygen we have learnt many things about patience, perseverance and appreciation of the little things. Life is more fragile that I had imagined but has more beauty to be found when I know where to look. Life is precious. Faith loves going outside and watching the breeze touch the leaves and the birds sing a song as they feed in the trees and talk to each other. She is so intrigued with the world outside. She watches from our deck but hopefully soon the time will come and we will have a low set house so we can go outside and touch the soft grass, watch the ants march by, smell the flowers and watch nature in action close up. I just have to be patient while we wait for our house to sell. But when it does the world will open up a little more for my husband, Faith and I. Again patience and trust in God is a must. (James 1:1-8) Time will pass and hopefully sooner rather later Faith will be off the oxygen and she can be free from one less tube.

A New Pram!

Where to begin, when we were first told that we should get a special pram for our daughter Faith, my first thoughts were she doesn't need a special pram, she is going to be able to sit up by herself soon, move around and do want she wants. What I had in my head was a pram that was of hard plastic, screamed 'disability', and caused people to stare, was big, bulky, heavy, ugly and it would not allow her any movement at all and would hinder her development. I thought that this was the physiotherapist's way of saying, your daughter isn't going to move forward so you might as well accept it. I wasn't going to accept that. She was 15months at the time. She is still a baby to me, still tiny, she has oxygen and a NG tube, surely not another technical piece of equipment to make people come up to me and question me more than they already do. I wasn't open to this idea, I wasn't ready, I didn't think we would need this, we were told that she would walk, run, jump and play like any other child, it wasn't meant to be this hard. My dreams seem to be fading and reality is in my face and I need to somehow deal with it. So, I said, ok, what are our options?

New Pram

After talking it through with the physio she explained she wasn't trying to stop her moving around or moving forward in development but help to do those things. She said it does take time to get used to it all. She has always been so good to us. The physiotherapist gave us websites to look up and there were scary looking prams, I wouldn't call them prams anyway, most of them looked uncomfortable and stiff. But we found one, the buggy system that had three 3 wheels and looked like a normal pram but with a little added support. We trialed it for a few days and it was ok but it wasn't soft padding it was quite hard and even though it supported her, she looked uncomfortable but I guessed this was the way it was meant to be. On first application to NSW Health, we received a letter saying our request had been denied due to safety concerns and it had three wheels (that wasn't in the letter but I read about the use of 3 wheel prams in the guidelines and it wasn't something they liked) . It was approved for Australian standards but not for NSW Health, anyway, the physio pointed out another pram and I looked into it a bit more and it looked so much better so we arranged for the company to bring it to our house so we could have a look at it. It was the Stingray R82 (http://www.r82.com/Products/Stingray-Frame-5.aspx), it looked so funky. It came in different colours too. Faith looked so much more comfortable in it and the padding and supports were soft, apart from being machine washable, it was compact compared to other ones and easy to use. It comes with a tray so Faith can play which will be wonderful. We decided this was the one.

The Stingray R82

An new application to NSW Health was put in. Stingray R82 is much more expensive than the buggy system and NSW Health made it so hard for us. In end between the physiotherapist, the company supplying the pram, a wonderful and supportive local politician it was approved. We received a letter saying that it would take up to four months before it was ordered. We thought that was a bit long as we needed it now not in 4 months time. So our local state member made a call and it got ordered, now we just had to wait the 5-6 weeks for its arrival. Very exciting. We could see that this pram is going to be good.

At last in early May it arrived and it just looks like a sporty expensive pram. It has an oxygen holder which is wonderful as it will give us more space to store things. It came with a clear perspex tray and a lovely sun hood for walking. Faith fitted into it with such ease, she took to playing in the pram perfectly. Out came her little hands and grabbed her stacker cups and started poking the play dough. It is also good for food play. I can now push Faith around the house and out on to the deck. She feels more included and can play independently and I can show her what drawing is and so many other fun activities. She is supported in her body and there is a little head rest and tray for her feet to rest comfortably. She looks so big and long in it. It is a bit heavy to go down the stairs but when we are down it allows Faith see what is going on outside and be part of the world. I was so skeptical about this pram idea at the beginning but when I did some research and thought about the benefits to Faith and now how it has already helped her and we have only had it a few weeks. It does take time to adjust to this 'new world' of special needs and what it holds but this pram has brought Faith so much happiness by being more mobile and being able to play with her hands and learn more.

Food Aversion and Texture Sensitivity

Faith is progressing so well, being UTI free and now she is gaining weight at last, she has a double chin! Very cute! We decided we needed to make a start again on pureed solids, she has done well in the past but it has been her health that has held her back. I am keeping track of her progress in a food diary so can see any patterns or triggers. Our first day was successful, she wasn't too excited but it went ok. We tried again in the afternoon and she flatly refused. The pattern is much the same with the exception of a few days when we were out with other kids and she ate perfectly. After about a week, we even started moving her from pear combined with mince (need the protein so we can reduce the amount of milk during the day) to include sweet potato that she at first loved. It then seem to go so terribly wrong. Faith stared pooling the food in her mouth, she would cleverly hide it in her mouth and when we wiped her mouth it all came out.

I didn't understand what was happening as we will doing so well and moving forward with tastes. I felt so discouraged, a failure, we had all worked so hard to keep the routine there even when we went out. But no more, we could see by her shaking her head and then covering her head, and then crying that this is not want she wanted. We changed locations, spoons, bowls, played music, watched TV, nothing would change her eating. We are in contact with the speech pathologist in Brisbane and she is amazing coming up with ideas, techniques and encouragement so I gave her a call. She came back with brilliant ideas and said that it is probably best for now to get rid of the spoon and bowl as there is so many other great ways to eat food. She said that instead of traditional spoons try

• carrot sticks
• cheese sticks
• celery sticks
• scotch finger biscuits
• baby rusks
• a sponge finger biscuit
• make puff pastry sticks

Other great ideas included just playing with the food anywhere and everywhere and lots of food play and her ideas were for example,

• jelly then add rice bubbles or cornflakes for different textures after she has the stickiness on her hands
• creamed rice
• dry pasta
• baked beans
• mushy peas
• blueberries

And any other ideas we can think of. She also said that we could put food in shallow Tupperware containers and then she would have to dig it out. Other ideas included finger painting with potato shapes, pasta and veggies. She also said we could blow bubbles in the liquid foods as she loves bubbles. So many wonderful and creative ideas but with all this great input I didn't know where to start. So I started with the basic ideas when I eat I give Faith some of my food. At first, she rejected it and shook her head and would get annoyed at me but over the last few weeks we have been progressing slowly. First, she touched avocado in my husband's sandwich and mashed it in her hands. Then later that day I put melted chocolate on her hands and she eventually ended up sucking it off. Very small steps. I sat her in the high chair with some cut up jelly in different shapes and got out her toys so she could play with them at the same time but wouldn't move just complained. I saw her just touch it but pulled her hands away quickly. 

We thought it would be beneficial to have a speech pathologist locally so got in contact with the early intervention one and she has been working with us and our speech pathologist in Brisbane. Faith has not only texture sensitivity in her mouth but also in her hands. She is now 21months and still struggles greatly to grasp objects. We show her how to play and how to touch different textures. She is getting better at it though, now she is well but it takes her so long to get used to something new. In saying that she is getting more curious about new things than before. She reaches out and touches some objects when I am holding her when before she would just pull her hands back so we are making progress. When I eat Vegemite toast, I give Faith some and she is now poking it and playing with it. I just need to keep at it and be diligent in showing her new things and repeating old things. Faith is doing so well with all these new things she is encountering, she hasn't been able to try any of these things really until now, so for her, she is moving quite quickly.

Faith went to her little friend's 2nd Birthday party a week or so ago and apart from loving watching the kids play and eat, she grabbed at my felafel that had cucumber dip on it (yummy) and played with it and that was a really big step forward in the food play arena for us. We are not actually offering her food to eat as such, we are just wanting her to make friends with food by having some of our food when we eat to play with. We were eating some yummy Pringles last night and I sat a chip with Faith. I ate one, then I offered her a plain Pringle and put it on her lips and she looked at me and I said would you like some more and she opened her mouth and I sat the chip on her lips and she licked it, yay! What a huge achievement. She hasn't willingly licked food for so long. I love seeing her move forward and doing more things.

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.

A Way Forward - NG Tube

We were transferred by ambulance and it was a rough ride, Faith was really uncomfortable and I could tell she was feeling just as sick as I was. It was quite late at night and Faith was due a bottle feed and I was also hungry including the ambulance drivers, so they stopped at McDonald's and we had some food to keep us going. We got to the Brisbane hospital by midnight and got straight in. Faith was reviewed by a neurosurgeon and they were going to do a MRI but decided to leave it until the next day. Faith was also on a drip as she had another UTI. By about 2am we were moved to the big kids surgical ward as Faith was now over 1 and she would no longer be taken to the babies ward. We both feel straight asleep. Faith was on neurological observations so they woke her every couple of hours. They struggled to wake Faith as she was so exhausted but that is all it was.

The next day Faith had to fast for the MRI and as she wasn't drinking very well anyway and had no fluids running through so we were concerned about dehydration. The MRI got rescheduled for the next day. We could see she was very lethargic as well as having her normal vomiting she was really unwell from the UTI. The next day the MRI went fine. Positive news, Faith's shunt is working fine and the ventricles are looking good. False alarm! 

The doctors decided to keep Faith in hospital to treat the UTI again by IV antibiotics. We stayed an additional 3 days and were sent home with Faith on Cephalexin but we knew this wasn't going to work long as she was always resistant to this antibiotic. Give her a few days and the UTI would be back. Her vomiting was back to normal but she still wasn't really really well. Faith's weight was really struggling as she vomited so much formula up. The dietitian thought it best to try another formula called nutrini and we mixed it temporarily with the infatini so she wouldn't get too confused with the tastes. But we could see Faith was weak and wasn't growing as she should but there seemed nothing we could do but keep going on as we were.

We came home and life went back to the normal way, neuropathic pain, vomiting, sweating, life was just the same. We'd still see a few good days but our biggest concern was all this vomiting and the lack of weight gain. We had another spina bifida clinic and we saw the consultant pediatrician and we said that we thought Faith needed a NG tube or something similar as she is losing weight and just not getting stronger, Faith's ribs could now be seen. UTI's were a constant battle and we never seemed on top of them. None of the antibiotics seemed to work. That particular day Faith was really sick. We had a choice of coming back the following week as an elective admission or get admitted that day. We thought that it was urgent enough so asked for that day. Faith was admitted and put on a drip again to treat the UTI. So over UTI's. Because the vomiting wasn't explainable (Arnold Chiari ii malformation was enough) as such so Faith was isolated. We knew it wasn't anything catchy as she has had it for months but as precaution I guess. 

That night a lovely nurse showed us how to put an NG tube down and we started the feeds. The doctor over prescribed the amount of formula needed so we had way to much food going in and it was a constant battle as it would then make Faith vomit more as she was over full. Eventually we just refused that amount and she did do better and got stronger with slightly adjusted amounts. We stayed in hospital nearly a week and got shown how to insert an NG tube. We then headed home. It was at this point, though we didn't know it at the time, a new antibiotic was introduced to us that would improve Faith's life and help her grow. Faith was put on a 10 day course of Nitrofurtantoin.This antibiotic seem to be only available from the Brisbane hospital. It caused Faith really bad nausea and we had to give some ondansetron to help her through it. After 10 days she got better and we had some ok days, still with some vomiting but a little bit better. UTI's seem to occur 2-3 times per month but a week good is a beginning. It is was good to have a bright spot. Maybe this is the beginning!

A Fight for Oxgyen and a 1st Birthday!

The sun is shining which is a rare thing as it always seems to be raining at he moment. It is so nice to be home. Faith seems better within herself with the oxygen so that is a good thing. She doesn't pull at the nasal prongs but rubs her nose a lot. So her nose doesn't dry out from the oxygen we spray saline up there a couple of times a day. I think this annoys her more than the prongs. Faith's oxygen concentrator arrived a few days after we got home and we now have a long cord so we can wander around the house. The concentrator has a sound like a space ship and takes a little getting used too. We also found out that we were allowed two small portable oxygen cylinders a month. So that is a help. Don't want to be stuck at home too much. As usual we are home a short time and Faith's vomiting and sickness starts again, the sweats and neuropathic pain. We seem to get a glimpse of Faith being well and she gets sick again but at least now we get a week here and there. Hopefully soon it will be more good days than bad.

We received a phone call from the Brisbane hospital informing us that our application for oxygen with the NSW government has been rejected and that the company that supplies the oxygen could call and ask to collect it. She said that we shouldn't give it back, the local hospital was going to have to cover the cost until this is sorted out. We received a letter saying that Faith doesn't meet the criteria for oxygen. The letter didn't state the exact reason why but apparently it is to do with the Arnold Chiari ii malformation not being recognized. The NSW government department apparently thinks that if the Arnold Chiari ii malformation is causing problems then she should have had the oxygen from birth. What has that got to do with it anyway, she needs it now so that should be all that matters. The Brisbane hospital is working hard to get this sorted out and we decide a little bit of political pressure won't hurt so we contact our local member for State government and get him involved and surely he can help.

We were told that there was a lot of arguing and debating between the hospitals and different departments and we also wrote a letter of appeal. Another reason they used, was the policies they used was for adults was the same policy for children but because of this some areas of pediatrics were overlooked. After a couple of weeks our local member for government managed to get an extension of a couple of months until Faith could have another sleep study and that report would be provided to the NSW health. The same day we found that out the company providing the oxygen telephoned and said that they were coming to collect the concentrator and we said that they would have to contact NSW health as we were allowed to keep it. At least we have the oxygen for now.

Faith's first birthday was coming up and I found this hard to cope with. I had thought that by now life would be calmer or at least we would have a well baby and she would be progressing. Sadly, Faith was still really sick and a year was about to pass and we seemed no further forward and if anything we felt like we going backwards at times. So, sadly the arrival of Faith's birthday, though a celebration of her birth and a blessing to us, was hard, as it just reminded me of the day Faith got taken away to NICU and the sickness started and I didn't feel much further along. Each day we didn't know whether she would be sick or well so even though we really wanted to have a party we couldn't as we knew the risk of her being really sick was high or even that we might be in hospital. We seem to be there a couple of times a month now.

Faith 1st birthday came and she was unwell. We sang her happy birthday and tried to be happy but it was hard. I think to her it was just another day of being sick. Faith was still not eating much pureed foods as we would get further ahead with pureed food and she would be so sick and she couldn't eat again so back to bottles. We just seem to be going in circles and a few days later Faith was back in hospital, this time the local hospital. We were only there a few days and she was transferred back to Brisbane for a possible shunt malfunction.

Oxygen

In hospital again, we seem to live here, we know the staff so well and how things work and it is becoming second nature. Whenever we are in hospital Faith is attached to a oxygen saturation monitor and during the night I have always noticed that at times her oxygen saturation drops to around 60% and by the time I get the nurse in to check Faith, it has gone back up to 100%. She seems to do this all through the night but more so early in the night. I kept telling the nurse and she said that she has recorded it but since she didn't see it and whenever the nurse stayed it wouldn't happen. One day the oxygen saturation did drop when she was awake and this hadn't been noticed before as she usually had the monitor on a night. I alerted the nurse to the situation and she noted it again and called the pediatrician. We are getting somewhere. When the consultant called in we explained it to him (as he wasn't told) and he was concerned as breathing difficulties and apnea are a big concern with Arnold Chiari ii malformation. He said that this needed to be investigated but as it was Friday we should just go home and come back next week for a preliminary investigation. If anything significant is found then they will contact the respiratory team for a sleep study. He did say that we should have a apnea monitor as a precaution. We were quite anxious as we could see he was concerned too.

We got home and found it hard to get a monitor, small towns, we should have known and got one in Brisbane. We tried the local hospital and they said you will have to wait until Monday when the pediatrician is in. She needed one straight away not a few days away. In the end we found a really expensive one but at least we could sleep soundly at night. It was something. We were only home a few days and we headed back to Brisbane. We were unexpectedly taken to the bigger kids ward as the babies ward was closed for renovation. This was a bit of shock going from babies ward to big kids ward. We know Faith would go there when she was older and it would be fine but she wasn't ready. Or maybe we were not. Either way first impressions didn't go well. They didn't know us so they appeared distrustful of our care of Faith. This put us on guard which meant no rest because we couldn't trust them. They just wandered in and said, and started hunting around for catheters, if she had asked she would have know we do that and it needs to be done right and not so frequently as they were trying to do. We found straight away they didn't listen to what we would say about Faith's care. It was a constant battle. They would come in and go to start doing something to Faith and I would ask politely what are they doing and when they explained it was either unnecessary as we took care of it or it was totally wrong. It was quite frustrating. The first night there Faith was just to be connected to the oxygen saturation monitor and it would be recorded and the respiratory doctors would review and see what needed to be done.

As suspected she did drop quite low and for extended periods at a time. A nurse looking after another patient wanted to give her oxygen but the nurse that was looking after Faith said no this is a recording we shouldn't touch it. I found that distressing and when I was about to say I didn't agree, her saturation went back up to 100% and she was mostly ok for the rest of the night. The next morning it was decided that Faith needed a detailed sleep study but there was quite a wait to have a sleep study done but luckily at the last moment someone cancelled and Faith got the spot. Little did I know that this was the last day I would walk free with no oxygen tubes and tank on my shoulder. I wish I had cherished the freedom more. Anyway, Faith's head was covered in wires and she had some attached to her chest, tummy and feet. A hat that went over Faith's chin was put on as well so the wires didn't move. She cried all the way through and continued to scream and complain for quite a few hours before she settled. The previous night's monitoring I had little sleep so when Faith was settled and asleep I fell into a deep sleep. The next time I woke Faith was on oxygen and the respiratory nurses left it on and connected until the specialists review the findings. We walked back to the ward attached to the oxygen cylinder and after a stressful entrance we got back to Faith's bed.

It was found that due to neurological reasons (Arnold Chiari ii Malformation) Faith required oxygen 24hours a day. For some reason I saw us coming to hospital to see whether Faith needed oxygen but I didn't think 24hours a day. I thought she would need it at night time. This was a shock. We crossed state borders for Faith's care and the health system in NSW works a lot differently to QLD so we unfortunately found out that we would have to weeks and weeks in hospital before to go home as the health system to obtain oxygen was so slow. This was quite a shock. I was so upset, staying away from home just because our state government couldn't organise a supply of oxygen for our daughter. Surely there had to be some other way. We looked into privately buying oxygen but it was so expensive. We would have to wait and wait.

My first Mother's Day was to be spent in hospital, another special occasion in hospital. I was sad. A wonderful surprise was that Faith said her first word, dada and a few hours later mama, what a considerate little girl saying her first two words being dada and mama on the same day. She started talking so much from this point, it has to be because of the oxygen. How exciting, Faith's first words! What a great blessing! The day before Mother's Day too. On Mother's Day my husband bought me a beautiful bunch of roses and Faith bought me ugg boots, very spoiled. My mum and dad visited and the make it happen pain nurse organised a portable oxygen cylinder so we could go and have lunch together. That was so much fun. We had a family day walking along the river and dining out.

My husband had to go home sadly and with ongoing challenges of the current ward, we were being moved back to babies ward as it had reopened. Yay! That night I got so sick, I had picked up a vomiting bug at the other ward, so we were immediately isolated. I was so sick and my husband had to come back as I could barely move. Thankfully, it was only a 24hour bug and apart from being weak and unsteady I was able to just look after Faith. A remarkable thing happened the respiratory nurse had arranged and pulled some strings and got us some portable oxygen cylinders from the hospital. Unbelievable! Wonderful! The way it worked the local hospital pays for the first couple of weeks of oxygen so that would get us going and she would push NSW Health to comply and give Faith oxygen. We were going home! After being told we would be in hospital for weeks we were going home!!!!!

Something Beautiful

Being at home a lot and searching for some encouragement I came across a song, Something Beautiful by Nathan Tasker. This song inspires me to continue and remember Jesus' amazing grace and sacrifice. I might find myself in darkness but he is my light. I just have to have perseverance and patience. I don't feel like I have any of those, but l try. Below are the lyrics that brought me a remembrance of this light.

I'm counting the stars

but the sky is overrun

You made a sea of endless lights

I would've been impressed by one

More than enough

Your Love shows no reserve

and just like the brilliant sky above

You give me more than I deserve

There's no more looking down

my eyes are looking up now

I can see something beautiful

the sun is shining on my face

every day is a brand new miracle

You keep giving grace upon grace

My heart was a desert

till You opened up the sky

and down came a million drops of mercy

now flowers multiply

I want to be consumed

I'll never get enough of You

I can see something beautiful

the sun is shining on my face

every day is a brand new miracle

You keep giving grace upon grace

Over & over & over again

You're faithfulness has no end

I can see something beautiful

the sun is shining on my face

every day is a brand new miracle

You keep giving grace upon grace 

What is our day like?

What is a day like for us at the moment? Well, it involves a morning start before dawn not with a happy baby but one with neuropathic pain, vomiting and extreme distress. I am not sure how I am meant to cope with this, if all things were "normalish" then I would most likely be at the hospital but with us this a normal aspect of Faith's life and ours too. Most people who haven't experienced life with a child with special needs don't know how to comprehend this, they expect us to function normally and visit family and friends and do all the 'normal things'. I explain as best as possible but the message doesn't seem to get through it seems to get ignored or acknowledged, then forgotten. Or I guess the other action of some people is to stop calling and stop wanting to hang out, I think this is the worst part as it hurts more. I can understand why they run away and stop contact, I guess it is based in fear and not being able to understand. But, it doesn't make it any easier to manage when we are hurting too and find life hard, intense, frightening and lonely. I didn't imagine it like this, I didn't imagine following this path. I just want to do normal baby stuff too. I understand why some turn away. I don't go out much as the vomiting can come at any time and Faith can't cope with it as she is so unwell, so we just stay home and are hidden away from the world.

Other days are worse and we get to the point where we pack up our things and get in the car and drive back to Brisbane and present to the emergency department as she gets so sick. The trip in the car is a nightmare, instead of being able to manage the vomiting to an extent at home it is a moving car where I sit in the back and learn to catch vomit. Lots of fun. We usually stay 3-7 days and Faith gets a little better but as soon as we get home it starts all over again. I have so many photos of our happier days and they are generally in hospital or with us walking by the Brisbane River. We still attend the spina bifida clinics though now we manage to see all the doctors as Faith's an in patient and the doctors see how sick she is and admit her again and we go through the same cycle over and over again. There are not many good days and not much of a life for any of us let alone Faith. She still can't sit up and developmentally we are falling behind, but it's not fair as she is always sick and there is no chance for growth and development if she is never well more than a week at a time.

A bright spark came unexpectedly in that we had a couple of good days that turned into a week, we loved this time. There was quiet and peaceful sleep. A baby that smiled a little. The neuropathic pain stopped at this time and so did the sweating. Bad days still out numbered the good days but it was a start. Each time we saw the sweating and strange temperature on each side of the body return we knew the bad days were back. Amongst this we found out that Faith was retaining more wee in her bladder than she should, so we started catheterizing 4 times a day. It wasn't a hard task it just another thing to do in our day. Faith started to get Urinary tract infections (UTI) which brought on more vomiting, temperatures and weight loss. To get Faith to gain weight was so hard. We changed infatrini formula to see if that would help. Faith sucked the bottle so intensely but we really needed to pace her as the faster she drunk the faster she would throw up. She would still vomit anyway but we just wanted to keep the formula in her as long as possible. Every time we tried pureed foods we would get into a good rhythm and she would get really sick again and we would be back to the beginning. It was so discouraging.

At times the doctors didn't want to treat her UTI's as they said if she has symptoms we will treat it. But the problem was how could you tell whether she was symptomatic for the UTI's as she was vomiting so much anyway. The Arnold Chiari does cause some of the vomiting but I think the UTI's were contributing as well. It was so hard to tell and so hard to know what to do. We were constantly questioning the doctors and trying to learn more and to try and figure out what was best for Faith. Doctors don't always know what is best even though the majority of them were trying hard. Faith was a prophylactic antibiotic being Batrium but after being on it for a couple of months it was found that all the UTI strains she had were resistant so it wasn't doing much so she was taken off the prophylactic. Actually Faith was resistant to so many of the antibiotics and she would improve for a little while on the drip antibiotic like Gentamicin but as soon as she was sent home with another one like Cephalexin, the UTI would return and back to hospital she went.

We spent so much time living at the Brisbane hospital as the local hospital service where we lived just couldn't handle Faith's conditions. It was to complicated for them. Every time she went there she always ended up picking up some other bug and was sicker than before. For now, we just had to keep going a minute at a time and hope and keep hoping and praying that life would get easier and we would see light at the end of the tunnel. Surely it wasn't far away!