A roadblock, trying to pass it!

Well, I didn't think I would be writing this from hospital but I am and as much as I hope to wake up and find it is a dream I do not wake and it is real. We came to Brisbane for a sleep study and it was our first big trip out with Faith's oral feeding. She didn't eat well that day because she couldn't eat the way she usually did. So after a long night we made it through the sleep and we awaited the results. Morning hours passed and we got a phone call saying the respiratory doctors could see us early and we were thrilled the sooner we could go home. The doctor had a grim face and added no she doesn't need oxygen anymore. The excitement and joy of this news was lost as my heart hurt and mind felt like I was entering a dreamworld, but no, this was real he said he wasn't happy with her weight. He said things that hurt to my core. He wasn't happy with what we were feeding her, nothing really, then the words that threw us, she looks to thin and she needs to be admitted to hospital and there was NO CHOICE. So many emotions ran through my mind, he was asking questions, all I could hear was NG tube and I was saying no, no, no, NG tube. He didn't get the message so with heart felt tears streaming like water falls down my face I spoke as firm as I could and said no NG tube and said why. My husband was as shocked as I was and trying to understand what was happening. How was this happening, she is eating and yes we were happy for help to increase calories and volume but surely no admission, surely not. But sadly there was no choice. I immediately called the Social Worker and asked for her help.

I have coped pretty good I think until this dark day that comes close to the worst day of my life, horrible things were implied and I might add were later proved  WRONG with blood tests. The doctors were wrong but no apology came. Yes, our little one was dehydrated this day and she is extremely anxious about hospitals which made the whole thing harder for her. Most of that day I felt that my heart was twisted and pulled and stamped on and will try to delete the rest for the hurt that it brings.

5 days later we are still in hospital and we have accepted their help with formula and have been allowed to keep partial of her homemade food, need something real inside her. I do understand that the medical professionals are trying to help and want was is best for Faith but they had missed alot of factors or rather were ignoring them. We will get back to real food but for now we do need some help to get her weight up and there is more but I need to ponder some more on how to write it and explain how it all turned to a road less traveled.   

2012 - In Review

What a year it has been! There has been twists and turns, down roads and paths we hadn't intended but we have God willing made it through each second, minute and hour that lead into days and months. There were times when I felt I might just sink but here I am still going.

Some highlights of the year!

Faith hasn't been in hospital for over 13 months

Faith can now go without oxygen when she is awake. Yay!

Faith got her sting ray R82 pram and the squiggles standing frame

Another great achievement is Faith has halved the medication she takes and will soon be on none.
 
We sold our high set house and bought a low set house, now we can easily play outside and go out with ease. 

We also get to go to more social outings and play dates and that is WONDERFUL!

We have met some new friends and enjoyed spending time with old ones :)

The biggest news being that Faith has no NG tube and is eating orally, though still having struggles with eating, but we are making small steps forward and that is the most important thing. We have so many things to be grateful for and so many blessings. I wonder what great and wonderful things will be in 2013!

 

'Just keep swimming'

I wrote the below yesterday when we were having a bad day, it sort of continued into today and I just wish it were over, sometimes are so hard and feel I like I won't make it through but I know I will I just got to keep pushing on. So here it is, one of many days I don't really want to remember.

I really loved watching Find Nemo and loved how Dory would say 'just keep swimming' and it makes me feel like 'just keep swimming just keep swimming' and I will get there eventually. I feel I just need to write. Today has been a hard day. It started last night, when I thought it would be a good idea to give Faith a kids probiotic, which I do nearly every night but last night I added a little more than usual to her blend (as she is on antibiotics) while it was warming and I didn't see but it had formed little clumps within the blend so when I pushed Faith's blend through her tube, it got stuck, but it really got stuck, I tried all the declogging ideas I could think of. Nothing worked so I had to wake Faith up, pull out her tube and and put down a new one. This has NEVER EVER happened before and believe me, it won't again, I felt like a failure, angry that I could be so stupid, all those type of feelings. New tube down and Faith wide awake and lies in bed annoyed that she has been woken up. I don't blame her, I felt annoyed at myself. The old tube wasn't savable and now I was left without a spare NG tube. I went to bed slightly sadden by the whole event, hoping a new day would bring a renewed strength.

The day just didn't start right, Faith was sweating from yet another UTI, we started another round of antibiotics, different ones this time. Faith was irritable which was understandable but I had to keep entertaining her so that she wouldn't realize that she felt sick and then vomit the antibiotic. Oh, why is it so hard today, the poor little thing was wet all over and not happy. After her formula feed in bed I thought I might go quickly into town as I needed a sugar bowl (another funny story for another day, let me just say, I am so over SUGAR BOWLS). As we were driving down a hill on a busy road, Faith starts looking like she will throw up and she did, which in itself isn't a biggie except when the NG tube comes out her MOUTH! I can't believe it! Some tactical moves later I am on the side of the road running to the side of the car, swing open the door and pull the tube back out through her nose. I am not parked in a particularly good spot so I make sure she is ok and head to a car park to sort it. My brain is on overload, all I can think of is I need to put it back down and my husband isn't able to help me today. Telling myself I can do this I can put it down I need to be able to do it on my own.

After we have wandered the shops I might say not really that happy, I have my sugar bowl and bonus milk jug and head to the car with a very sleepy Faith, also trying not to let her go to sleep as her oxygen was at home since we are allowed awake outings with out it. I have had enough, I head to the car and on the way home she looks like she is going to be sick but isn't but I am still overwhelmed by my disaster of morning, but it doesn't finish there. It is Faith's feed time so I rush inside and put the air con on as it so hot and organise myself. I put the NG tube down, encouraging myself on, praying too. It is down, I aspirate, no aspirate, I can't beleive it, it must be the right spot, I think it is but she is so hungry there is no food left in her tummy. But I have to be sure so I get her to drink some water and still nothing. I am going to have to pull it out. Several attempts later after Faith deciding she had had enough, she continually pulled the tube before I could get it in and then she'd just vomit it up. It wasn't working, I called my husband and said I need some help and he came home and we succesfully put it down, just having him there to hold her head and steady her made the difference. Definietely a two person job. Faith is now fast asleep and been so for a few hours and I am trying to collect my thoughts and re center myself. I am exhausted!

We have been working on Faith's feeding program, oral alerting etc for the last several months with the end goal being Faith eating purees again. But after today, I realised that I need to put ALL MY EFFORTS into getting Faith off the NG Tube, I know we have been putting alot of energy into but I came to realise even more that this has to be our MOST important priorty as she can't continue with it and we need the NG TUBE TO BE GONE. It is hard and I must press on!

A Sleep Study

Wow, the last few weeks have soared by and it has been a few weeks since I wrote my last blog but so much has happened. We have packed up our house, sold it and bought another, we have been to Brisbane for Faith's sleep study and moved into our new low set house and have been unpacking. It has been crazy, the days are filled with all the normal activities but so much more.

Faith has and is coping beautifully. Last Monday we headed to Brisbane to have Faith's 6 month sleep study, I couldn't believe it was in the same week as we were moving. Sleep studies always equal no sleep for us so I thought, how will we do it and move in the same week. A thought that is always in our minds is, is this the time Faith will come home without oxygen or are we getting our hopes up again. It is so hard to have hope but not get carried away and excited. But I was excited at the prospect of no oxygen even if I was getting my hopes up. We checked in at 5pm and settled in to our box room with no windows and iron door, I know they need the big doors to keep the sound out but I feel like a princess trapped in a tower or when the study starts a gold fish in a bowl as Faith is filmed and they can see her but we can't see them. The last sleep studies Faith has had she screamed all the way through and then the nurse putting on the electrodes and wires. Then Faith screaming herself to sleep and then not sleeping much as after she calms down, realising  I am sleeping in a bed next to her and maybe I should talk to her and play all night. So she generally talks the night away with little sleep for them to study her oxygen saturation's. But this time Faith just complained about the wires and electrodes and she settled pretty peacefully to sleep only waking later in the evening for a chat, waving at me and full of beaming smiles. Very lovely! Faith was sleeping but I could not.

So I played with my phone, wandered Facebook, forums and emails, but still sleep evaded me. I was waiting for when the nurses would arrive to wean Faith off her oxygen. And they came, sometime after midnight. I was awake more and more and then the horrid stress headache arrived. I didn't know what to to do, so I prayed, I prayed for hours, I could hear on occasions the oxygen saturation monitor and prayed harder that she would hold a good saturation and she wouldn't need the oxygen. I talked to God for hours, I talked to him about Faith and what being off the oxygen would mean (as if he didn't know :)). Faith would be more free, we could go on a slippery slide together, we could go swimming without being attached to the pram and limited where we can go because of hazards of tangling, so many things. I spoke of the Bible and the miracles Jesus did then and how I believed he could do it now, I felt like I was the lady reaching out to touch Jesus' cloak, if only I have enough faith. With so much that has happened with Faith, I don't like to get to excited but I figured the best option was to pray and pray as I lay in bed watching Faith sleep. 

Early morning I dosed into dreamily sleep and woke to Faith stirring. The nurse came in and it was true Faith was still off the oxygen but the nurse had to put her back on until the respiratory specialists read the data and report. Faith dropped her saturation's down to about 87 or a little lower about 5 times when she was in REM (dream) sleep. The last studies she hadn't lasted off oxygen for more than an hour but this night she lasted 6 hours. Could this be happening might only she need oxygen when she is sleeping, I tried not to get to excited but it was hard not too. I praised God for his goodness and how he answered my many prayers. Faith's specialist appointment was 6 hours away she we headed back to our motel for some rest before we faced the morning as it was still around 6am.

To fill in time we headed to Southbank and had the most yummy morning tea together at Max Brenner Chocolate Cafe, mmmmm was really good. We also saw that the QLD Art Gallery had a exhibition on called the Portraits of Spain. We used to go to art galleries before Faith was born and now we thought let's take Faith to her first exhibition so we lined up and wandering through the artwork, Faith chatting and squealing and eventually falling asleep. We had some time for some lunch so headed to our favorite cafe before returning just in the nick of time for Faith's appointment.

We waited and waited....eventually we were called in and the respiratory specialist went through the report with us. There was improvement since the last study but she still needed the oxygen at night as she didn't take deep enough breaths when she was in REM sleep. He chatted away and then we asked well, can she come off oxygen when she is awake? Our breath held, the doctor flicked through the report and Faith's history, rubbing his chin, he said yes, I think so. Faith can come off oxygen when she is awake but needs it for sleeping. Wow! Praise God, at last, a step forward with her oxygen, she is getting stronger! Let the freedom of less oxygen begin.

My Birthday

A sunny trip to the beach

Here I am , I turned 31 today, wow! When I write it down it seems so much more older than when I think it. I have always loved birthdays, my mum and dad spoiled me with parties and being surrounded by family and friends. The pool cake was my favorite that my dad decorated. What precious memories to have. Faith picked up a cold and as first I thought, this isn't too bad but it has turned out to be not very nice. With the oxygen nasal prongs and NG tube it is making it quite hard for her to manage her running nose and I would think a sore throat. The cold struck quite suddenly on Monday afternoon and she slept most of the day yesterday and seems to be doing the same today. It is horrible. I feel so helpless. Faith has not really had a cold/flu before so this is new to me. I was hoping we would have a lovely day together on my birthday but instead she is sleeping and sleeping. I decided to take her to the doctor this afternoon as her eyes are quite red and runny not sure if she has conjunctivitis too. In between making sure Faith is comfortable and as happy as can be with being sick, my husband and I are going to have a quick lunch together and then hopefully if Faith is well enough go out to dinner tonight in Byron Bay.

It has been a few days since I wrote the above and Faith ended up sleeping for 3 days with a few short minutes up to change her clothes and refresh her a bit.  A week later she still sounds so rattling, she doesn't have a chest infection thankfully and the doctor didn't think she needed to be in hospital as she has oxygen, an NG tube, we were pumping the fluids through and we were montioring her oxygens levels and her temperature. She has been getting better quite quickly since she just spent so much time sleeping.

Even though my birthday was spent back at 2 hourly feeding Faith, it was still a special birthday, I got remembered by friends and family and two lovely meals out, no washing or drying up. I even got a sleep in, a rarity in our house. This year we didn't up in hospital with Faith even though she had a bad cold, it wasn't anything more. Though I was scared it was going to happen but it is still a birthday to remember with fond memories!

A drive in the country

I love a drive in the country, I love stretching my eyes, discovering new things and being able to talk with my husband and spend time together as a family. We have always gone exploring exploring old places and finding new and up until now it hasn't been a regular activity as Faith has been too unwell and didn't travel well. But at late she has been better and we have been much more confident, and when the oxygen cylinder appears she says car car, the arms go up and she is ready to go out. As I am putting her in the car, organising the oxygen bottle and doing up her seat belt, she waves her hands, and looks excited. I love it. This particular day it was raining, one of those days that I usually snuggle up inside and don't venture out. We had to cancel our normal Sunday activities as there was so many coughs and colds around we couldn't take the risk of Faith getting sick. So out on the road we went. Packed food, a thermos of tea and it was time for adventure. Faith was ready for a sleep by the time we left but fought sleep as there were to many trees and puddles to look at and music to sing to. She read her book, stared aimlessly out the window and told us stories of what she saw, though only some clear words came out.

Of course there is always a little drama, I peered at Faith, playing peek a book as we drove along and said to my husband, Faith's NG tube looks longer than usual but I think it was the angle so turned back around. Later, I played peek a boo again and Faith giggled and smiled this time I said to the other half, ok you need to stop, too late I just finished pulling the tube out as it Faith has carefully pulled most of it out already. Faith had had her lunch tube feed, so I packaged up the ng tube and started the car and off we went with a very happy Faith with no NG tube. She looked quite happy with herself.



Let me share our drive in the wet, rainy and misty country....

Nimbin Rocks

Clarry Hall Dam

A secret place near Clarry Hall Dam

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

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.

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 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!!!!!