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, June 25, 2011

Veronika's trip to Hospital.....

I still am trying to catch up on the sleep i missed out on for the 4 nights that Veronika was in hospital.....I think sleep must be over rated as I don't ever seem to get enough sleep! I guess that it didn't help that I realized after being there for 3 days that I hadn't had my medication to treat my over active thyroid(Graves Disease). I had a massive flare up about 6 weeks ago, and have been on a high dose of meds since.....but YES it does help when I remember to take my tablets!

This is Veronika in Emergency, temp over 39oCelcius

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.

Tuesday night was another "I don't want to sleep in the cot, and you can't make me night". Wednesday morning Veronika drank 100mls and then had a bath. We were getting ready to give her another drink when the Dr's came to do their rounds, and asked if I wanted to take her home.....seriously I don't think he needed to ask me. I said if she didn't drink enough over Wednesday and Thursday then I would bring her back in Friday and they could put a bag of fluid into her.......

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

I should know better.....

Early last week I was talking with a friend and I made a terrible mistake, I said something that I should never have said, and yes I should know better..."I can't believe its June and Veronika hasn't been admitted to hospital this year". Thursday and Friday Veronika didn't seem herself, I couldn't put my finger on anything, she just didn't seem her usual happy easy going self.

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

I love school holidays

Another week has passed. The school holidays are flying by so fast. I am enjoying not getting up at 6am every day! I have been having a sleep in to around 7am and some days if Veronika isn't awake its 7:30, as she is usually the 1st of my 3 children to wake.

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

MRI Results....

Well the results were extremely positive. On Veronika's 1st and 2nd MRI"s she had some nodules in  the ventricles. I was told they weren't really sure what they were, maybe it was left over residue from the stroke she suffered prior to her birth.....anyway They have disappeared....how amazing. Veronika's Paed obviously said that was really good. Now the main thing that showed up was the brain injury that she had as a result of the stroke, but we already knew about that, and we have been working on the resulting hemiplegia for a very long time.....and we will continue to!

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

Fingers crossed for good results

Just a quick note to say we are off to see Veronika's Paediatrician tomorrow, and hopefully she will have the results from Veronika's Brain MRI from 2 weeks ago. We have been so busy the last 2 weeks that I haven't had time to even think about it....

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...