Tuesday, 25 September 2012

Just some random nattering!

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

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

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

Sunday, 23 September 2012

The Blood Test

So this morning we headed off to the local hospital for Faith's blood test, I really really didn't want to go but we thought it was a good idea to check iron, blood count that type of thing. It would be good to see how she is going since the last blood test she had was when she was sick last year. We have quite a lot of bad experiences at the local hospital from when I was pregnant and taking Faith there. They haven't been accepting of Faith's latex allergy, had no understanding of spina bifida or Arnold Chiari and didn't seem to want to learn. The children's ward didn't have staff who even new how to catheterize, they wouldn't listen on how Faith's medications were done or her formula, they at times ruined her special formula. Though some of the staff were friendly, there attitude changed if you didn't agree with them or questioned there actions. And to go back made it REALLY stressful, I'd been dreaming about it too, not wanting to put Faith through it again.

Our local pediatrician promised he would meet us there for Faith's blood tests since taking blood hasn't been successful elsewhere, he said he would be able too. After paperwork at admissions and heading to the ward, we arrived to find he'd just left 30 seconds ago and after they paged him, he wasn't coming back, I can't believe it! I know doctors are called to emergencies but from my understanding he just went back to his rooms up the road. This doctor, though friendly and helpful and he does support us but this isn't the first time he has let us down. I was trying to trust. They called his registrar and said that they had a skilled blood taker coming and I thought, ok we can try it. A couple of hours later, a friendly lady turned up and it turned she was the same lady who had tried for 3 hours last year when Faith was sick, all this time and energy wasted when we could have just gone to the pathology. Instead Faith was exposed to the children's ward and the adult hospital germs. And of course they had trouble getting the blood taken and on the 3rd attempt, they got a small amount and a bit more from another vein. But really was all this necessary, if the doctor had just kept his word. She was extremely distressed but not just that, not taking the latex allergy really that serious and then making a comment, oh, she is a challenge! I felt like saying that is why Faith was admitted to the hospital so we could get someone extremely skilled so Faith wouldn't have to be subjected to unnecessary trauma. One of the nurses even said she won't let me touch her hand, oh, come on, surely you would not to be touched after your help stick a needle into my hand bend it the wrong way.

Faith came home completely exhausted, dark circles under her deep blue eyes, numerous bruises, she went straight to sleep and slept for nearly 4 hours. Poor little thing. She still is quite quiet and not her self. I think what I find hardest is that I spoke to the doctor about our concerns of taking blood from Faith and our concerns about the hospital previously and he just 'forgot' us. It is good the test is done as we can then accurately figure out any dietary changes but I feel that there should have been an easier and less traumatic way for everyone involved. I am thankful to come back to our little calm, peaceful home where we can recharge and recover and hopefully forget.

Friday, 21 September 2012

The fun in the garden!

A rose from our rose garden!
We even have a lemon tree!
Instead of our days spent inside the lounge room, wishing we were outside, we spend many more minutes and hours on the grass looking at the sun, clouds and the birds flying above, we watch the wrens busying themselves in the garden and the penny lizards scurrying around. There are dragonfly's and butterfly's, oh, how I love spring, new beginnings! We both get much more fresh air and sun, I think we even go out more since it is easier to get to the car. 

Faith has more spaces to play and look at different things. We have only been here 2 weeks and we have planted potatoes (she thought that was hilarious when digging the holes), corn seeds and lining the edge of the garden are pots with herbs and hopefully soon to plant some seeds of marigolds. I enjoy companion planting. It always seems to help and make the garden full smells and more textures. Faith lies on the rug, watching everything we do, other times she sits in her pram observing the world and taking it all in. 

The first morning in our new house when I was gazing with such thankfulness at the garden, a little blue wren landed not far away and was singing a sweet song. I wish I had my camera out then.

So many different varieties of flowering shrubs
We have seen a willy wag tail around and these are my favorite birds, they always seem to make me feel that everything is going to be ok, I don't know why, they just do. We have since discovered that this little willy wagtail lives in the big cool, leafy tree outside our window. The first night in our house and Eleanor was unsettled I think we woke him as he started singing and now each night he sits sleepily in his tree singing the night away or singing in his sleep. What a beautiful night song he has! During the day he lands near the window and sings his day song and we all admire him. I thank God for such blessing as the willy wagtail and his song.

Loving the raspberries
We started digging through the overgrown tomatoes and weeds and we found raspberries, I at first thought they were strawberries but tiny and then I saw the white flesh and had a taste and it burst with flavor, now Faith and I go outside and I eat the raspberries and she looks at me with intrigue of eating from the garden.

Wednesday, 19 September 2012

Blended Diet, finding a balance

Faith has been on a blended diet for 3 months, I thought it was longer. 3 months of less vomiting and less washing. Wow, we have seen quite a transformation! We still have a few vomits a week but Faith's hair is getting thicker, skin colour more bright, less sweating, no coat on her tongue. If we add something that doesn't agree with Faith the vomiting comes back and we make a hastily retreat back to what works. We take everything slowly as that works best.

We have tried a few meats but each time we do we find Faith can't seem to tolerate them, she just ends up with lots more vomiting. Our nutritionist thought it might be a good idea to add some amino acids to Faith's blend and we have now tried it and each time we do Faith's vomiting increased. We tried 3 days here and then a break and then another 3 days and each time she vomits up her blend. Then we stop the amino acids and the vomiting stops. So I don't know why that happens. We have added a little bit of zinc and she is coping fine with that. Then the next step is to add an iron supplement without making Faith feel unwell or constipated.

When we last added Faith's blend ingredients into the computer program, Foodworks, the amount each day that we gave Faith was 70% of her required calorie intake which is great because she still has 3 formula feeds so we are overall exceeding Faith's calorie needs. Her weight is still the same no decrease, no increase, but we have struggled with one UTI and some vomiting from the amino acids. I just want her to gain a bit more weight but I know she will get there, I just have to be patient. We decided to increase the amount of blend she has during the day so hopefully that will help also. We increased the flax seed oil slightly and will slowly start making a few other changes to increase weight. We don't just want to add butters and oils we want to give Faith a balanced diet as when she eats she won't eat all that oil and butter.

The nutritionist thought it might help if we did a blood test on Faith to check different levels of nutrients and when we saw the local pediatrician he thought it was a good idea. The problem is that Faith is soooo hard to get blood out of so we need a doctor to do it and the only way is to admit her to hospital and then take the blood and then we can go. So silly, it is all to do with funding of the local hospital and it doesn't seem to get much from the government. I really dislike going there as there haven't been any positive experiences, generally negative ones (we usually drive across the border to the children's hospital where the specialist's are) and the hospital is full of latex products and with Faith needing to have no contact with latex it is a constant battle with the staff. I know it will be fine, just causes a little apprehension. It will be good to see what the blood tests show and then we can make changes to her diet to help her along.

Friday, 14 September 2012

Faith's feeding program - progress!

Last week when we went to Brisbane for Faith's sleep study we also had a appointment with the spina bifida association's speech pathologist. We couldn't fit the new pram in the car (need to get a bigger one for all the stuff) so we sat Faith in a corner chair and had a little table too. Last time we tried a corner chair Faith needed more head support than what it could give but this time after we strapped her in with some green lyrca she was fine, she liked it. We started Faith's feeding program, working our way through the food hierarchy and when we got to the avocado and I didn't even cut it up, she started rolling it around, mashing it in the other foods, she used it like a ball and she got quite vigorous with it. Faith was having fun!

Faith then waited for me to bring out different foods and mashed, squashed, squished and then she wiped her head and it went all over her head, it was great. Faith hasn't played with food for sooooo long. We can see the program working and it is exciting! Since we moved and there is so much change (an unsettled Faith at night with little sleep) we thought we would introduce family meals together. Last time we tried having dinner together she just got so upset and it became to stressful for everyone. Our new house has a outlook to the backyard where little wrens sing there songs and we feel safe in our little haven.  We have now had two family meals together and she has laughed at us while we eat, chatted, sung and looked curious, so it has been a success.

Family meals are part of Faith's feeding program as it is part of the transitioning process back to eating. It feels good to start this 'normal' activity. So Faith feels in control we have the food set out so everyone just serves themselves and hopefully then she feels no pressure, we also use white plates like in the feeding sessions so Faith doesn't get distracted. She isn't eating yet but we are on the right track to introducing food again. Each day Faith is taking a few sips of water, at first she shakes her head and I say, just a little bubba and her little tongue comes out for sip. Such a good little girl.

I am hoping we will have another feeding session either today or tomorrow as it has been  week since we had one and we are trying to work up to 2-3 times a week. I love seeing Faith get better and better...

Sunday, 9 September 2012

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.