Some of those appointments included getting both legs plastered to make new foot orthotics(AFO'S). Veronika was surprisingly tolerant of having this done. It really doesn't take that long, but all the same, it must be weird for her. To have someone do that to your leg, then just before it sets, cut it off to use for the AFO's.
When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….
I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.
Saturday, December 17, 2011
Some of those appointments included getting both legs plastered to make new foot orthotics(AFO'S). Veronika was surprisingly tolerant of having this done. It really doesn't take that long, but all the same, it must be weird for her. To have someone do that to your leg, then just before it sets, cut it off to use for the AFO's.
Saturday, December 3, 2011
We had the pleasure of dancing at International Day for People with Disability, with our BrightStars.
After the dancing I had a really good chat with a Mum who I haven't seen for a while. Its so good to talk to friends outside the walls of the hospital or various places we take our children for their therapy. We caught up on the last 6 months or so....the highs and the lows we have been thru, and about where we are heading next year with our children....The if you don't laugh you are going to cry....But more importantly we talked about how blessed we are to have these amazing children in our lives. How often children like ours are referred to as 'special' children...but how we feel that we are the 'special' ones, special that Veronika chose us to be her family, and special that her little man chose their family.
As parents we often think we get to choose who our children are, but its more a case of our children deciding that they wanted to be in our family. Yes its not an easy job, being a parent, let alone being a parent of a child with 'extra' needs....but WOW its worth all the effort.
When Veronika smiles, everyone who sees her smile, smiles with her. She some how has been Blessed with the Ability to make a person smile, even when they are having a really hard day. For that I am grateful. I guess that I decided a while ago that if Veronika could change how one person views people with disAbilities, that she could have the Ability to make people STOP and enjoy life and not rush through it, to make people see that people with disAbilities are real people, people that contribute to Society for the better, then the world would be a better place. I think that Veronika has opened many peoples eyes, to accept her for who she is, that she is not the little Downs girl, but that she is Veronika, and she happens to have DS and CP and a Congenital Heart Defect....but none of her diagnosis define her. Yes they are a part of who she is, but not what she is. And the flip side of that.....I am often known as Veronika's Mum, but very proud to say that yes I am Veronika's Mum, and I love her to the moon and back, and WOW look how far she's come.
Sunday, November 20, 2011
The later was the correct answer.
As you know Veronika was diagnosed with Cerebral Palsy (left side hemiplegia) at 11 months. When she was diagnosed with CP....that was the hardest diagnosis for me that she had been given. I knew that she had the stroke before she was born, and that she had brain injury from that. And yes we had been told she would most likely never walk. But I guess I had never really made the connection that she would be given another diagnosis. Up to the time when we went to see the Brain Injury Specialist, I had be over analysing everything Veronika was doing with the left side of her body, along with her physios. It was at around 9-10 months of age that there was becoming a significant 'tone' difference, as well as a very different amount of use in particular between Veronika's left and right arms. So we were referred onto the Brain Injury Specialist.
I guess that day I had no idea that I was going to get yet 'another diagnosis' for Veronika. I thought I was just going to have a chat with yet another Doctor about Veronika and how she was developing, in particular the left side of her body......maybe DENIAL is a more accurate description of how I was around that time. I remember that day like it was yesterday. I remember holding it all together while I was seeing the Specialist with Veronika, I remember that exact moment he said she has Cerebral Palsy.....I remember him giving me the forms to register her on the Cerebral Palsy register.
I also remember holding it together enough until I got to the car, strapped Veronika into her seat, and then sat in my seat and just cried. I called my husband to tell him, and also gave him the "but its not fair, how come she has to have Down Syndrome and Cerebral Palsy?"
I didn't know what to do next....so I went to my Mothers of PreSchoolers group, and held Veronika close while I cried some more, while I talked with our mentor and a couple of the other Mums I was close with.
So what have I finally got around to.....I finally filled in the forms for the CP register, and hand delivered them. They have been on my kitchen bench for over 2 and half years, they have been into hospital on a couple of trips, thinking that I would 'make' the time to fill them out while I was sitting, filling in my days while Veronika was unwell. You may be wondering why its taken me so long. Its like admitting that yes Veronika has CP. Once she is on the register its official. Don't get me wrong, I know she has CP, after all I'm not stupid(or not that stupid anyway). But its kind of like, yep its official, Veronika's on the CP register, so she really has CP. Its a feeling that's really hard to explain, maybe that its almost like I'm not in control or something.
But life goes on, and I am proud that I have finally filled them out and delivered them.
Tomorrow is a new day, all be it with more appointments for the week to come.
Thursday, November 10, 2011
Veronika got a walking frame 3 weeks ago. This was the day she got it....those of you who know the journey we have been on.....Veronika's journey to mobility.....after being told after her 1st MRI when she was 1 week old, she would not walk....well there are no words to describe how over joyed I am, how proud.....I think the video speaks for itself. I watched it over and over and over, not believing that Veronika had taken some steps in a walking frame. PROUD.
I then taught her to sign 'clever', as when we showed people her video, they would always say how clever she is. Last week we went back to see the physio that gave us the walking frame. She said to Veronika, 'are you going to show me how you can use your frame?' So I put Veronika into it, she took 3 steps, and started to sign 'clever', when her Physio said Veronika put your hand back on, you need to hold on with both hands......I said to her, 'she's telling you she's clever'. Her heart just melted, and agreed that yes Veronika is clever, but she still needs to hold on with both hands.
I managed to get thru 8 doctors/allied health appointments for Veronika last week, and 2 for me. I had a steroid injection in my shoulder on Friday, as its been quite sore for a few months, and Veronika's physio told me I should get it looked at. Well she was right(of course) and yes I did need to look after it!
So i figured if I could get thru so many appointments last week, then I could have a quieter week this week, and maybe even a bit of time at home, so I don't have to carry Veronika around every where. And yes I have managed to get a bit of time at home with my Princess. Just as well, because I had a look at my diary today for next week, as one of Veronika's physios wanted to change her appointment forward by half an hour for next Tuesday. Ummmm.......somehow I have managed to book 9 appointments for Veronika next week(including her school, but still have to find time to get her to St Giles hydrotherapy), so looks like next week is going to be full on too!
Oh well, life is to short not to be busy.....
I just remembered too that I owed you a photo for Down Syndrome Tasmania's Buddy Walk. Despite the fact that it drizzled/rained all day, we had a great turnout, and a great time at the Buddy Walk.
Saturday, October 29, 2011
Veronika was an Ambassador for St Giles Walk With Me(on October 16th), and the day was fantastic. The weather held off for the most part. We have been going to St Giles since Veronika was about 8 weeks old, so it's was really good to be able to give back to them, as they have done so much for Veronika. I have a couple of pics from the day...
Wednesday, October 19, 2011
I had been think for quite some time about getting Veronika additional Physiotherapy and Occupational Therapy(OT). I registered Veronika under the Better Start funding in July, and last week I made a few phone calls, spoke with a few friends with little ones with additional needs as to who they see privately, and then spoke with some therapists.
I talked with an Occupational Therapist and we decided to see her fortnightly until the end of January, and booked all the appointments in......(just hope I don't loose my diary, should write them all on the calendar at home too i guess!).
I also talked with the Physio that has seen Veronika thru her school(ECIS), and we booked to see her in November, but I requested to see her early if she got a cancellation. I had a phone call on Monday, they had an appointment for Tuesday(yesterday) so I took it.
So yesterday morning we went to MyTime(support group for families with pre schoolers with additional needs) then went off to see the Physio. We didn't need to waste any time with a history as she 1st saw Veronika when she would of been around 8 weeks old. She wants to get her into a second skin
as that will help so much with her core stability, which will in turn help with her arm/leg function. She has given us some things to work on at home.
We then went to see the OT. She has so many fantastic ideas for Veronika. I was shocked how quickly the OT got Veronika to do what she wanted. Just really simple ideas, things that won't cost anything, that we can work on without having to go out and spend heaps of money that we don't have! One of the 1st things she did say though was, "I want to see her in a second skin".
I find it amazing how things happen, as I emailed her Physio at St Giles last week asking her to look into if a second skin would be appropriate for Veronika. I got an email back Monday, saying she had looked into it and she would talk more with me about the clinics that the second skin people do down here when she saw me on Wednesday(today). I think the private OT and Physio confirmed that yesterday, and today I told the physio today that Veronika needs a second skin. So now I am trying to figure out the best/fastest way to get one for Veronika!.
As we were leaving the OT yesterday, the Speech Therapist that I had called and spoken with about seeing Veronika privately had a quick chat with us. Her books are full and she isn't taking new patients, and recommended someone else in the same practice. She said she would be following Veronika's progress. She 1st met Veronika when she was about 7 weeks old and had not long been home from hospital, as Veronika's oldest brother was going to see her for Speech Therapy. So I looked at the receptionist to make an appointment, and she had just had a cancellation for today, so I took it.
So today we started private speech therapy! Oh the ideas she had.....
Can I just say my mind is full of the possibilities......
Monday, October 10, 2011
Veronika was asked to be an Ambassador for St Giles Walk With Me. It is on this Sunday 16th October. Starting at the Lawns of Parliament. Veronika has been going to St Giles since she was 8 weeks old. We started off seeing a Physio there and an Occupational Therapist and continue to. We have also seen a Speech Therapist there, and its the St Giles pool that we go to weekly. So it was our pleasure for Veronika to be an Ambassador and give a little something back, to St Giles who have supported us so much on her journey to mobility, and continue to.
Veronika and Willow have joined forces and have registered a team for Walk With Me, and naturally their team is Walk With the SuperGirls.....explains itself really. If you are free this Sunday please come and show your support for Veronika, and Walk With Her, or if you want you can follow the link and donate to Walk With the SuperGirls.
As you know from my blog in September, Veronika has begun to 'cruise' a little bit along the blanket box. So today was a very exciting day, we went to get her measured for a walking frame. Her physio was going to put the order in today, so fingers crossed it will be ready Wednesday next week, when we see her Physio next. Then to see if she can manage it with her left side(side affected by Cerebral Palsy). In particular her left hand, as we don't know if she will be able to hold on to support herself.
I have spent the last 2 weeks stressing over how much Veronika is drinking, or rather not drinking. She usually drinks close to a Litre of formula, but for the last 2 weeks she has all but stopped eating, and is only drinking 350-400mls of formula. I called Paediatric outpatients asking to see her Paediatrician, and was able to get an appointment 3 days later, when she was next in. In the mean time, they said take her to the GP and get her checked that there is no reason she isn't drinking. Of course the GP couldn't find anything, and agreed that yes she did need to see her Paediatrician, and was glad we had an appointment. When we went to see her Paed, as we were going into her room, she was commenting on how well Veronika was looking.....I agree yes she is looking the best she has looked in a very long time....she just wont DRINK. She asked Veronika if she drinks, to which Veronika signed "drink" followed by "milk"....and then she asked her again if she actually drinks, to which Veronika grunted and shook her head. After a thorough look over, she could see no medical reason Veronika wouldn't eat, except to "stress her mother out"....."which appears to be working". Yep had to agree with that diagnosis! Her Paed was very impressed that Veronika could 'cruise for her chocolate', and said maybe we need to use some old fashioned bribery and corruption.....
Tuesday, September 20, 2011
veronika cruising for chocolate 149
and I think right about now I am the proudest I have ever been. Veronika continues to inspire me, she really is my Hero. Her determination is amazing. Her resilience to try, try again is never-ending. And hopefully that doesn’t change over time.
Veronika continues to learn new signs, and last week she mastered ‘love’. She signed ‘love’ followed by ‘Mummy’….I then asked her who else she loved, and she signed ‘W’(Willow) her best friend. Was just too cute. I find it absolutely amazing how much information Veronika seems to process. I was telling her speech therapist a couple of weeks ago, how at the dinner table one night, I was talking to her, and asking her questions. I could see her deep in thought processing the information, before she signed her answer. I can’t for the life of me remember what it was actually about, all I can remember is just thinking how much Veronika seems to understand.
Veronika is also excited to tell you that she will be an Ambassador for St Giles Walk With Me Hobart, on October 16th. We are looking forward to raising awareness for people living with a disAbility in our community. I was thrilled when Veronika was asked to be an Ambassador, and naturally yes was the answer.
Veronika and Willow have joined forces, and would like to extend a warm welcome to everyone to come and Walk With the SuperGirls…..
I have more to tell, but I also need to get some rest….so maybe next blog…
Tuesday, September 6, 2011
After Veronika had been on the trampoline for 30 minutes yesterday, I continued to ask her if she had finished….and she kept shaking her head to say no, then she would sign 'more'....'bouncing'(wont let me upload another video at the moment, so will try again tomorrow)
We saw Veronika’s new Physio last week. We are continuing to work Veronika really hard on standing independently, and trying to teach her to ‘cruise’. She does a little of this in the hydrotherapy pool at St Giles, but on dry land, this is a really difficult skill for Veronika. In the hydrotherapy pool her body is supported by the water, it helps to balance her. She still can’t stand independently in the water, I dream about the day she will be able to, so I don’t have to hold her the whole time we are in the water. I find I need a few extra hands when she is in the water to get her working really hard, as there is so much to do. Keep her feet on the floor for a start, balance her around her hips, without too much support so she is doing the work herself, put the toys just out of reach so she has to move to get to them etc…..If we can get Veronika to start to ‘cruise’ on the furniture at home then we can possibly look at getting her into a walking frame, but 1st she needs to have the strength in her legs, and her left arm(the side with Cerebral Palsy) to support herself
Jordan, my 9-year-old had a friend over today to play, being school holidays. His Mum and I had the chance to have a chat, in between 4 boys aged between 6-9 running in and out. She was saying she is amazed at how well I cope with Veronika’s extra needs. I was trying to explain to her that it’s really not that hard. I know for a fact that Veronika shouldnt of survived her birth, and that I would rather have her than not have her. I find Veronika an absolute delight, she is so easy-going. Most of the day she is happy and content. It’s really hard to explain, but Veronika has taught me so much, not just about her, but about myself…..and I love my 3 kids to the moon and back, and would do anything for them. And if that means taking Veronika to 4-5 Doctors/allied health appointments each and every week, then spending countless hours on top of that at home doing physio, then I will, because Early Intervention will give Veronika the best chance to maximise her potential.
Veronika is a cheeky little girl too, she continually makes me laugh.This afternoon during her therapy session at home, we were doing her shape puzzle. She was deliberately putting pieces in the wrong place(square in rectangle, circle in square) and then she would crack up laughing and clapping. Was SO cute, and yes I didn’t video it, as I was keeping her balanced as this was a ‘standing at her little table exercise’.
Monday, August 29, 2011
I presented at the Mother's of Preschoolers(MOPS) leaders conference on Friday night. This is where the theme for MOPS 2012 was revealed. MumSense
Wednesday, August 24, 2011
My week is only going to get more exciting from here. Friday I am off to speak at a conference on my journey with Veronika. About finding my MumSense. I am really excited to be able to share some of my journey over the last 3 and a bit years, but at the same time, a little nervous. It's not the speaking in front of a room full of people, its more about sharing some pretty personal "stuff". I will have to let you know how i get on!
Veronika is recovering from her latest UTI. She bounces back so fast which is amazing really. Tomorrow we have a planning meeting with her Physio, Occupational Therapist, hopefully her teacher from ECIS is she can make it in between appointments, and the social worker. We will be looking at the goals we set at the last meeting(which was maybe late last year). I am really excited about this planning meeting as Veronika has reached some of those goals, the 2 biggest holding her own bottle and crawling. It will be interesting what her therapists have their minds for Veronika's goals for the next 6 months too.
Stay tuned for the goals.....
Wednesday, August 17, 2011
Monday, August 8, 2011
Another proud note, was driving along today. Veronika was in the back.....listening to her CD. When we got up to Glump went the little green frog song, and she started signing Frog....so cute.
Wednesday, August 3, 2011
The weeks are passing by so fast. Veronika is keeping me busy as ever. Last week she was a long case study for the Australian Paediatrician Exams. We have been asked to participate for 3 years, and is something that I really like to do. I kind of feel as if it's a way that Veronika and I can give back to the hospital that we have spent so much time in. We have also been asked many times too if Veronika can be used in a practice exam, to which the answer is yes. I sometimes wonder if Veronika's file has a red mark on it or something as quite often when we are at the hospital for an outpatients appointment we often seem to have people come ask if they can do a practice exam on her. When Veronika was there in May for her MRI and hearing test we had 2 Doctors come find us!
Last week while we were waiting to get started Veronika kept crawling over and sitting in the door way, and said the usual 'ayyy' to everyone that walked past, and when they looked at her she would smile and blow them a kiss. When her Paediatrician that we see for Veronika walked past, she stopped and said, 'Veronikas in fine form today, stopping everyone on their way past.' For those of you that know Veronika I know you will be picturing exactly what she was doing!
Last week we also registered for the Better Start Program. I was really surprised when the package turned up in the post Monday morning to say Veronika was now registered. Didn't think it would be that quick or that easy! We have a planning meeting booked later this month with Veronika's Physio, Occupational Therapist, Social Worker and hopefully her teacher from Early Learning. I am hoping that way we can get some plan together as to how best to allocate this funding to maximise the benefit for Veronika
I am off now to do some messy play with my Veronika....
Sunday, July 24, 2011
I managed to get more scrapbook pages completed than I thought I would, which is always a bonus! I was working on some of Veronika's album, from just after her 1st Birthday to when she was around 20 months old. WOW has she grown. She was a little baby for a 39 week baby at 5lb 15oz. I still laugh when I think about how on her 1st Birthday I put away all her '000' clothes, and on her 2nd Birthday I put away all her '0' clothes. Looking back at the photos and the things she was doing to where she is today is just amazing. I remember talking with her Physio probably would of been around 3-4 months ago, about how everything "is just so slow". I know learning new skills for Veronika is such a challenge, but over the last 8-9 months Veronika has just amazed me. She has progressed and met some pretty big milestones, one of which we thought she would never ever do, to crawl properly. Up on all 4's. I guess that's one of the reasons that I love to scrapbook, brings back the memories.....yes the good memories, and the lets call them challenging times too, the ones that make us stronger.
However all good things come to an end as they say, and tomorrow we are back to the usual....so we are off to meet Veronika's new Physio, and the head Physio at St Giles and also we will be seeing her Occupational Therapist. Will be really interesting to see what her new Physio has to say....and see what her goals are for Veronika over the 6 months Veronika will be in her care, until her original Physio is back from long service leave. Wednesday we have Early Learning and after that we are off to Carers Tasmania to register Veronika for the Better Start Package. Thursday is a day I am surprisingly looking forward to. I was asked a couple of months ago if Veronika could be a long case study for the Australian Paediatrician Exams. We have done this the last 2 years and I always find it really interesting to see what questions they ask. As one physio said to me after last years exams, "I would love to be a fly on the wall in there, as they would come in and look at Veronika and think this will be easy, a little girl with Down Syndrome" but when then get started and realized there is more, actually much more to Veronika than her primary diagnosis you can see them get frazzled. But realistically that's what its going to be like when they complete there studies.....
Just thought of another story to tell you. Last year when Veronika became really unwell and my GP took one look at her and called an ambulance, which got there really quick(our GP is in North Hobart). By the time we got to hospital Veronika was in severe respiratory distress and had a temperature of around 39.6 from memory. We were taken straight to resus where the Doctor was waiting to assess her. He asked for a fast medical history, while he was looking over her.....as he was listening to her chest he lost the colour in his face and asked if there was any other medical information I had forgotten to tell him.....ooppps sorry Veronika has an ASD(Atrial Septal Defect, her hole in her heart that was 19mm, so that's pretty big!).....the colour returned to his face as he said to me he was glad that I knew about that as he didn't want to have to tell me that he heard a severe heart defect, especially when she was so unwell......wasn't long after that they were drilling into her shin bone without an anaesethetic to get some fluids into her, as all her veins had collapsed. Something I never ever want to watch any child go through....it was horrific. It was actuall the 1st time since she was born that I actually thought we were going to loose her....
Anyway on a happier note Veronika is smashing it at the moment. She is getting stronger all the time. Her endurance has improved so much that she isn't having a day sleep everday anymore. She is standing up at the couch straighter, instead of slouching forward. However I still am struggling getting her to keep her shoes and her foot orthotics on. She has figured out how to take her AFO off(her big foot orthotic on her left foot), something I will be discussing with the Physio tomorrow no doubt. Veronika is also signing more, and putting more signs together. A couple of weeks ago, we went into my work for a drink. Veronika ordered her usual, 'coffee' and a 'biscuit', (babycino and date scone). We were sharing the scone, when I went to eat some she signed "STOP" followed by "eating".....then proceded to sign "more". So yes I was compliant and stopped eating, and gave the rest to her, and the following day I was telling her teacher at ECIS that Veronika is now signing in sentences.
Saturday, July 16, 2011
It has been a kind of surreal journey since Veronika's hospital admission. When I am asked why she was in hospital the answer is "just pneumonia". I usually get a shocked reaction from people, "what do you mean just pneumonia". I guess thinking back to when I was growing up, I always remember pneumonia as being a really serious medical condition, yes I know it was then and yes it is today. But I guess there are so many other people out there going thru much worse medical "conditions". Yes I was really worried as she deteriorated so fast as she does, but the Doctors in Emergency are great. I still have a little chuckle when I think about when we were taken into resus from the back of the ambulance, and the Doctor that was on, got a quick medical history from me as he was assessing Veronika. She was obviously dehydrated, and when he asked "how do we usually rehydrate Veronika, with a NG tube or a drip?" and my answer was "last time you did an IO"(when they drill straight into the shin bone to put the drip into the marrow in the bone, and yes there is no time for an anaesthetic, not something I ever want my daughter to go through again), he quickly looked for veins to get a drip in ASAP as they obviously didn't want to have to do an IO again.
But once Veronika was stable, she was re hydrated, it was just a matter of waiting for the respiratory infection to clear enough so she could drink and eat again. I guess the amount of time I have spent in hospital with Veronika since her birth, I have seen and talked to a lot of parents that have really significant battles to help their children fight. Yes Veronika does have severe multiple disabilities, but at the end of the day, they aren't terminal. Yes her life expectancy is reduced because of her disabilities, but she still has to opportunity to live a long, happy life(at least this is what I pray for).
Veronika has taught me so much over the last 3+ years. I still remember the day like it was yesterday, that my Obstetrician noticed the bleed in her brain. He had no idea at that point what caused it(still we don't know), or what it would mean for her down the track, or even if she would survive her birth. BUT she did, and I Thank God she did.
I was talking with a close friend this week about remember how you always used to say "I cant remember what I used to do with all my time before I had children". Something that I think every parent says at some point. Well I have changed that to "I cant remember what I used to do with all my time before I had a child with extra needs" I wouldn't change Veronika for the world. She continues to teach me things about myself all the time.....and for that I am grateful.
Saturday, June 25, 2011
The 1st night Veronika was in hospital her temperature was really high most of the night.....it maxed out at 39.6 degrees, but as I said in my last post I think it was, the only really blessing from that is she was so lethargic that she dozed most of the night. Sunday night she flat out refused to sleep in the cot, so we snuggled on the recliner as best you can! Every time she got back into a deep sleep I would just get her settled into the cot, when the night nurse came in to to her hourly obs, and shine her torch in her face and wake her up!!!!! Angela, who's daughter was in the bed opposite Veronika's, told me the following morning she was about to tell the nurse to turn her torch off for me!
Monday night was the worst night we had in there. Veronika went into respiratory distress again, late in the afternoon, and was breathing at 2-3 times her normal rate most of the afternoon, and was 'sucking in' her chest, and in her neck, and was doing a bit of the 'grunting thing'. Those of you who have had a child in respiratory distress know what I mean by the grunting thing....its kind of like they hold their breath and then grunt as they breath out. A Doctor once explained it to me that its kind of like the body's own CPAC. I was once told off for driving Veronika into hospital when she was like that, I was questioned why I didn't call an ambulance, because what was I going to do if she stopped breathing....I hadn't thought of that, and I explained to the Dr that I didn't want to be one of those people who waste resources, to which I was assured that I wasn't! So the nurse called the Doctor to come look at Veronika again around 9pm ish I think, and she called the Paed Registrar to come look at her. She was in an emergency and came in about 1am, and then they checked Veronika every hour, including basically stripping her off to look/listen to her chest, roll her over and listen to the back too! Was a very long night as I was worried about her. Its just not nice at all, when she struggles so much.
The other thing that the respiratory distress meant was there was no chance of letting us go home Tuesday. If it was just feeding, then I think I could of been in with a chance of talking them into putting a NG tube in, and I would take her home and tube feed. But when its respiratory, I was fresh out of luck. We tried often to get Veronika to drink Tuesday. She still wasn't at all interested, and I think she managed about 130mls for the day total. The drip had been turned off after Doctors rounds in the morning, in the hope she would get thirsty.....but even if she was thirsty, she still wouldn't even put her bottle in her mouth. She refused to eat, which she doesn't usually eat much anyway, but we tried everything the nurses could find, like 2 sorts of jelly, custard, soup, chips, yogurt. Things that she usually wouldn't have because of her intolerance's! But we tried.
We had a quiet day home when we got home. Thursday Veronika had an appointment with her OT and Physio. I was going to cancel, but because Veronika had her drip in her left hand for almost 5 days, she had become extremely 'fisted' due to her hemiplegia(Cerebral Palsy). It was also going to be the last appointment we had with her Physio before she goes on long service leave to next year. Her OT was not overly concerned with Veronika's left hand. She didn't seem to resist too much when she un-fisted(is that even a word) it. We made another appointment to see her in a week and a half to see if we could get her back to where we were prior to Veronika becoming unwell. The Physio was impressed that Veronika was still crawling, and hadn't resorted to rolling again. Last year when Veronika had pneumonia every 4-5 weeks, we continuously went backwards in Veronika's milestones. So it's really positive that this time it hasn't happened to the same degree. It took until yesterday for Veronika to get the strength to climb up on the couch again, and she isn't moving as fast as she usually does, but I am sure it won't be long to we are back where we started.
. Their children were in the Paed ward too! When I caught up with where there children were health wise, really I have nothing to complain about. Yes Veronika was unwell, but what she had wasn't going to kill her, and when she gets back to full health she will be the same little girls she was before she became unwell. I made the best of the situation we were in, and chatted with friends, while Veronika was asleep, during the day.
I think the highlights of the week were when Veronika was being transferred from Resus in Emergency to the Paediatric end of Emergency, and she was blowing kisses to the Doctor and Nurses that had been looking after her. They said she was just adorable, and that she could come back any time, but at the same time they didn't want her to come back as that would mean that she would be unwell......and on Tuesday when Veronika was being wheeled through the hospital in the cot to have her Chest Xray and she was sitting up there waving to everyone she passed! Was soooo cute......
Wednesday, June 22, 2011
Saturday morning she was the same. She wouldn't drink much and was really tired. So she had a sleep for an hour or so and when she woke her hands and feet were dark blue and cold. I wasn't overly concerned as this happens every month or so, but they aren't usually that blue. It took about an hour for them to come right, and they came back to normal colour for half an hour before they went blue again, and she started to go into respiratory distress and she broke out in a fever. So around 3pm I called the ambulance, and they took us for a trip to hospital. We were taken straight to resus where there was a Doctor waiting to see her. Within 5 mins of entering emergency she had a chest xray, and had cream put over her wrists to get a drip put in. Her temp was now just over 39. After she was stable we were taken to the Paed end of Emergency and from there Veronika was admitted to the Paed Ward after the Paed Reg had been down to see her.
When we got to the ward, as her chest Xray was clear, her urine speci that I took in with me(Yes I am one of those mothers that as soon as she begins to show signs that we might be needing a trip to hospital I get a sample if I can, but hey the Doctors really appreciate it) was clear, and they couldn't hear any creps or crackles in her lungs, the Doctor on the Ward, said it could be anything from maybe a viral thing to meningitis, worst case. She wasn't overly concerned that it was meningitis, as she was "too well to have meningitis".
Her temp maxed out at 39.6 during the night, i guess the only blessing about her being so unwell was that she was so lethargic that she dozed most of the night..
At some point during the night I reflected on Veronika's Journey thru the Emergency Dept, I do admit I shed a tear, not because it's awful seeing your child so unwell, she was being very well looked after, but because this was my 1st trip there since Karina my hospital buddy, passed away just over 2 months ago. In a weird way I was blessed Veronika had deteriorated so much, because she was seen straight away, which meant I didn't have to sit and wait in the waiting room without Karina.....I think about her every day, I love her and I miss her.
The Doctors didn't want to give Veronika IV antibiotics as there was no real indication there was an infection, and she has had so many antibiotics in her 3 years, we don't want her to have any if its not necessary.
On Sunday, I was given another reality check. I know to well that there is always someone worse off than us. Those closest to me really know what I mean. I guess people are always concerned about Veronika, which don't get me wrong, because I really appreciate every ones concern, care, thoughts and practical help. I had heard that one of Veronika's friends was also in hospital. A little girl that Veronika went to early intervention with when they were babies, and I often wondered why I hadn't seen them for a while. I didn't know why she was in hospital, but when I ran into her Mummy in the morning, well lets just say, there is always someone worse off that you. And if respiratory distress, and a raging temperature was all this Mummy had to watch her 3 year old go thru, was all she had to worry about, life would be easy. It kind of put everything back into perspective this week. Yes I was really concerned about Veronika and her health, and when she would be well enough to go home, but really I had nothing to worry about compared to this Mum, one of the most Positive, Amazing, Strong People I have met.....if you get the chance to read this, you will know if its you I am talking about. I start to get a little teary thinking about how Blessed I am that all I have to worry about is that Veronika has Down Syndrome, Cerebral Palsy and a Congenital Heart Defect.....on my journey with Veronika over the last 3 years I have met some of the most amazing people. People who take everything day by day. Jodie who's son Hamish has HPLH Syndrome, the worst heart condition you can have, and Vanessa who's son Toby was born 16 weeks early, and has severe apnoea's that require her to resuscitate him at least once a fortnight.
For now though I have had minimal sleep since Saturday, so I best be off to get some sleep or goodness knows what I will waffle on about next! I do however promise that I will tell you more about our time in hospital, but for now I just have to leave you with the quote of the week......from one of the Nurses after the Doctors did their rounds this morning......"It would of been a brave consultant(Paediatrician) that would of told you that Veronika had to stay another night".....yes it would of, and just as well he didn't say that, instead it was that we could go home.
Monday, June 13, 2011
Jordan and Jakob had an "out of this world" time on Monday and Tuesday at the School Holiday program at Howrah Church of Christ, was Mission Impossible Out of Space Theme. Veronika and I had a lovely time running around doing jobs while they were there. But we did however get a chance to have a coffee with Selina, one of my MyTime Mummy Friends.
Thursday we went to see our Friends in New Norfolk. We were going to have a play and BBQ at the Stop and Go park(Tynwald Park) as the boys call it, but it had been raining all week so we went to Toni and Leigh's instead.
Then Friday, was work day. After work Veronika and I(with Jordan as well) went to see Veronika's Physio as she had Veronika's new Pram for her. Veronika loved Jordan pushing her around the St Giles reception while I was talking to her Physio. Lets just say there were squeals of delight from her. Veronika's Physio also told me the news that our next appointment on 23rd June will be the last one with her for quite a while. She is taking her long service over 6 months! I am really happy for her, as she works pretty dam hard. But at the same time I feel a bit sad, as she has been working with Veronika since she was about 9 weeks old. She knows where we have come from, and the amazing milestones she has reached. She has been through some really tough times supporting Veronika and I, the highs and the lows. I am of course Blessed that there have been so many more highs than lows. I know that we will be passed over to another great Physio, who would of course had the opportunity to review Veronika's file. And I also know that its always a benefit to see a new therapist, but still Veronika's Physio has a good idea of what makes me tick too, to get the best out of Veronika. It's a challenge I look forward to meeting someone new, and I am sure her Physio will be surprised when she comes back from her long service leave.
Saturday, I spent some of the morning with Mark, Charlie and Amber, Karina's Brother and his children, and Kaz(one of Karina's best friends) and her daughter as we said a final goodbye to Karina. We went for a walk along the Jordan River, a place that they loved to walk or ride to as a family. It was a lovely morning, emotional of course, but I know that we have a Beautiful Angel looking watching over us. It was heartbreaking when Charlie, who is 2, was telling me that "Mummy's Gone". I said to him that Yes she was, but that I promised that as he grows up I will tell him and Amber(who is 1) all about Karina and the Beautiful person she was, how much she loved them and one of the Best Friends a person could have, and Kaz of course said she would too.
I didn't have as many appointments for Veronika this week, as I try not to in school holidays as it's hard on Jordan and Jakob. So there isn't a real lot to report back! However her crawling has improved so much, my little roller has not rolled for a week, which strangely I miss, but at the same time am so Happy that she is properly crawling, and getting faster and stronger every day.
Tuesday, June 7, 2011
I don't know if I have ever shared the next thought with you....but I believe Veronika is extremely lucky that she has Down Syndrome. Yes you did read that right.....I believe she is extremely lucky to have Down Syndrome. Bet you have never heard anyone say that before, and I guess you are wondering why.
Yes I will tell you why. Veronika suffers from severe Hypotonia(low muscle tone), which is extremely common in people with Down Syndrome. I have been told by a visiting Baby Neurologist(from Melbourne Children's Hospital) that Veronika is the floppiest baby she has seen in a long time. Normally i guess that wouldn't be something to get excited about. But with Veronika its different. Her brain injury is pretty severe, and really she should be super tight in her muscles down the left side of her body(her hemi plegia or Cerebral Palsy), and her arm and leg should be pretty much non use able.....BUT because Veronika has Down Syndrome and the resulting Hypotonia, her muscles aren't as tight as they should be....and she does have some limited function in her left arm and leg. This is another reason that I Believe she will walk.....because she has been blessed to have multiple severe dissabilities, but in a weird way they kind of help each other out. Don't get me wrong, her plethera of Doctors still don't know how to treat her, as the combination is rare, especially in someone as young as Veronika is....But I do believe she is Blessed to have Down Syndrome.....
I also talked with the Paed about Veronika not wanting to eat, and by not wanting to eat, I really mean not wanting to eat. I really am surprised that she has put weight on, I guess the only reason is because she is on a prescription formula. We discussed how that she hasn't eaten any more by eliminating completely wheat, gluten, dairy, eggs, soy and rice milk. So she thought maybe I should give her anything and everything to eat and see if she eats anymore....so I have given her a couple of thing she hadn't had for quite some time, and guess what, her skin flared up and she is now consistently waking thru the night and screaming the house down....I don't particularly want to put hydrocortisone cream on her skin every time it flares, and i most certainly don't want to be up with her every night while she is screaming the house down because she has a belly ache....will be an interesting appointment with the Dietitian in 2 weeks....
Oh and for those of you that I haven't seen recently, my Miss Veronika is crawling. Properly crawling, she started the day before her 3rd Birthday. Its sooooo very exciting, as she has to use her left side of her body. She is getting faster every day, and I haven't seen her roll in 3 days. She is of course pretty chuffed with herself too.....that reminds me I need to take some photos to share....
Wednesday, June 1, 2011
Yesterday we went to see a Physio that specialises in hydrotherapy for adults(I saw her when I had my knee reconstructed and did antenatal classes with her with all 3 of my pregnancies). They did a morning tea fundraiser for Veronika Will Walk, and purchased Veronika a mat, neck ring, rubber duck, and swimming nappy for her to use when we get her Hydrotherapy pool at home. I thought that was just wonderful....and she insisted that we bring our bathers and have a swim while we were there too...
Sunday, May 29, 2011
- Tassie Sweet Temptations
- Amcal Shoreline, Revlon Pack
- Hobart Flashengeist
- Island Berries
- Araminta Musk
- Tania Granquist, Stampin' Up
- Tango Hair Salon x 2
- Hudsons Coffee, Murray Street
- Ghost Tours of Hobart and Battery Point
- Jelila Designs
- Kingborough Sports Centre, Kindergym Party
- Paula Heald Massage
- Anne Bradburn, Tahune Airwalk family pass
- Solo Pizza and pasta
- Wedding and special occasion makeup
- Colin Mundy, Huon Pine Mantle Clock
- David O'Byrne, wine
- Puzzle People, 3 puzzles
- Spot on the fishing Connection, fishing rod and camping chairs
- KT, Eskimo Joe Poster, signed
- Wall Art By Eve
- Tasmanian Fire Equipment, 2x home fire safety packs
- Xtras Direct Shoreline, Necklace
- Mulberry Tree Shoreline Shopping Centre for Teddy Bear
- Babylon, for Hat
- Steve Lovegrove Photography for 10x$150 vouchers
- 9/11 Shoreline for wine donation
- Banjo's Shoreline for platters to feed the Entertainers
- Michelle Williams for wine
- Down Syndrome Tasmania
The following morning I had a call from Sallyanne. Sally had told her girls about what I wanted to do for Veronika. Jules and Sissy had decided that morning they would ask their teacher if they could do a free dress day and BBQ or similar as a fundraiser for Veronika. They then asked Bob(the Amazing Ashton) if he would do a magic show for a gold coin donation. He agreed and then it snowballed into Veronika Will Walk, with the main fundraiser Veronika Will Walk Gala day. Including 2 shows, a 1pm children's show, and 7pm adult show and auction. Which was planned for yesterday. I dared to dream even further and got a quote for the next size hydrotherapy spa, which would mean the goal would be $12,000......
In the 3 months in between,
- we had a couple of fundraising BBQ's at K&D, total $870.70
- sold malteaster chocolate's $120
- Liz from Medical Imaging ran an Easter Raffle, $1308
- Goodwood high school had a fundraiser, $149.95
- Entertainment book sales, $825
- St Cuthbert's Cup Cake day for Veronika, + donation $1029.95
- I was also given a lot of donations from people who couldn't attend VWW, but wanted to help
At the 1pm show we raised $2079.20 This came from ticket sales(pre purchased and at the door), Raffle tickets and donations received at the show.
The 7pm show and auction raised $7010.25. This was broken down into.....
- Ticket sales at the door/pre purchased, + donations at the door $2370
- Auction hosted by Tori $2990
- Silent auction $1376
- Donations $274.25
We also received a very generous donation, from someone who wanted to give us the opportunity to roof over where the hydrotherapy spa will go, and depending on the rest of the fundraising efforts maybe enclose or partly enclose the around the area, especially as a wind break, to make it more user friendly year round. This donation was $10,000 which I can say easily brought Sally and myself to tears, and Bob, well he was speechless there for a moment......
So the tally as it stands at the moment is.......
Michelle Pears, from Makebelieve Entertainment and her Funbugs, What fun, I have never seen so many antennas in one place!. Louise from Colour Me Dizzy, she didn't leave to every child that wanted their face painted, had been painted. Batman. Tansy, the clown Juggled and Juggled, and The Amazing Ashton....well you are amazing and that Birthday cake for Miss V......
From the 7pm show i need to thank....
- Tori Hodgman, what an amazing person. You did a great job with MC the evening and running the Auction at a minutes notice.
- Joel for his music as people were arriving
- The singers David Boon, Fiona Hutchison and Mia Palencia (she should of brought more of her CD's to sell, she sold out to quickly), Radio Silence, and the "busker Dudes" Joel got to come along
- Comedians Mick Lowenstein, Tim Logan and Tracy Cosgrove.
- The gorgeous burlesque girls, Miss Kittys Meow, Scarlett Jezabel, Lady Lola, and Lucy Sky Diamond.
- Bob for scheduling both shows and keeping them on track
Then there were all the behind the scene people, Auntie Mary for the decorations for the kids show.....The happy smiling faces.....Rob, Carolyn, Tansy and Dale for helping lug everything from the car park to Youth Arc, and their efforts to ensure the performers and other volunteers were looked after. My Dad, Lester for being the minister for finance and looking after door sales. My Mum, Anne for helping serve the food. Taylor for our RSA gal, and making sure everyone was refreshed. Ryan the door police, kept and eye on the door....
And how could I not mention our BrightStars.....our dance group we started late last year for people with Down Syndrome. I think our 1st public performance was a success opening the 1pm show.....it brings a tear to my eyes just thinking about how far we have come in just a few short months.....
Dani from DreamandJustBelieve
And Sally again I need to thank her for carrying around Veronika. She did get used to the red wig eventually!
We made Southern Cross News last night and the Sunday Tasmania today.....
So tomorrow I am looking forward to ordering Veronika's Hydrotherapy Spa.....