Miss Veronika has learnt to climb! She climbed onto the couch all by herself in late January. I was and still am one very HAPPY Mummy. I have to admit it was one of the proudest moments of my life. She has been managing to pull herself to stand up at the couch for a couple of weeks before she decided that one day she could have a go at getting herself all the way on to the couch.
You should of seen the DELIGHT in her face when she settled into the couch. She gave herself a little clap and a cheer. Then I gave her a BIG clap and a CHEER. Coming down was not so glamorous! Head 1st. Now I know I cant wrap her in bubble wrap, but I do have the niggle in the back of my mind that kids with Down Syndrome can give themselves spinal injury from sudden impact. Second time she came down, again head 1st, but she did put her arms our to brace the impact. Third and fourth times, she just layed down and rolled off the side of the couch, and then she figured out to turn around and go down feet first. Another Proud moment, Veronika has figured that one out all by herself, clever girl.
We met with our Paediatrician the day after my last post. So much has happened since we last met with her 3 months ago.
We had our trip to Melbourne for Veronika’s heart surgery, last November. The surgery that never happened, because Veronika’s heart is beginning to heal all by itself, a BIG answer to prayer. We are heading back to Melbourne in May for another check, to see how things are going, and hopefully she still wont need the surgery.
Then late November Veronika had a hearing test which she failed. They audiologist tried to tell me that she couldn’t hear at all in 1 ear and the other had partial hearing loss. I didn’t agree, and when we saw the ENT specialist 2 hours after that, he agreed with me. Both her grommets were still in, and he thought they might fall out in the next 2-3 months, so has re scheduled an appointment for around 6 months time, and may redo grommets if necessary and while she is under the anaesthetic he will do a hearing test then. Apparently that’s the only way to get an accurate result.
I also talked to her about the letter we got after seeing the baby neurologist. She has said not to worry and explained the BIG medical words that I was concerned about. Mainly to do with the nodules around the ventricles. She has recommended that Veronika has another MRI of her brain around the time of her 3rd birthday, which is in May. As it will be 2 years since her last one, and she agrees with the baby neurologist that it would be worthwhile to see if there are any changes.
We also talked about Veronika’s diet(or lack of eating) and I went through with her what the Dietitian has recommended. I have been concerned that Veronika wont drink anything but her formula, and when we have tried to cut that back to make her hungry, she doesn’t really eat anymore than she would normally. I reduced the formula for a week, and then because her fluid has been reduced, she stops using her bowels for around 3 weeks, and understandably she gets quite grumpy. She said not to worry about reducing what she eats/drinks and she thinks that when Veronika is hungry/thirsty she will hopefully start to eat/drink more and a variety. Well as much as a variety that you can have whist avoiding wheat, gluten, eggs, dairy, soy and rice milk!
Overall her Paediatrician was really happy with Veronika’s progress. She was amazed how much she has grown over the last 3 months, and how much stronger she has become. She has arranged for us to see her soon after the MRI she will schedule, and the trip to Melbourne to see the Cardiac team which is also in May.
So I think I have some answers to questions, and maybe some more questions……
Tomorrow we are off to see Veronikas occupational therapist early in the afternoon, then after that we are off to see the pediatrician. Maybe we might get some answers about the letter we got back from the baby neurologist, hopefully she will be able to interpret the letter with all those really big words. Fingers crossed!
I also forgot to share in my last post that Veronika has mastered her 2nd two handed sign, car. It was on Sunday, when we were leaving Orford after our weekend away, we said to her it was time to go to the car, and she signed it. Usually we sign something to her and wait, then re sign it and wait, then re sign it and wait etc, and try again later. Well we got a couple of signing videos for Veronika to watch and the 1 sign she has picked up is “car”. The other exciting moment was last week we went to Richmond with friends for lunch and to feed the ducks. Veronika loved seeing the ducks, and I continued to sign ‘duck’ to her. Later that afternoon when Jordan and Jakob were having their swimming lessons, Veronika was looking at her book, saw a picture of a duck and she signed it. Another proud moment. Yeah for my Princess!
Another busy couple of weeks have passed. We are back to the normal 4-5 Doctor and allied health appointments a week, so there is still never a dull moment in the Davie family!
A couple of Sundays ago we went to have afternoon tea with a friend who we met last year when Veronika was in hospital, Sallyanne and her gorgeous daughter Willow, who shared a room with Veronika, and Willows 2 older sisters, Jules and Sissy. Its amazing how you have only known someone for such a short amount of time, but is feels like you have been friends forever. Sally made Veronika some biscuits and blueberry pie. As Veronika is intolerant to dairy, eggs, wheat, soy and rice milk, this would be a challenge for most people. But the amazing Sally outdid herself. Veronika ate a big slice of blueberry pie, followed by a biscuit. Sally kindly gave us some pie and bikkies to take home for later. Well Veronika loved her biscuits, she had one the following afternoon, and was signing ‘more’ with such intensity that it just came out “stop yelling at me”, I said before I realized what I had said. My husband agreed that, yes Veronika was yelling at me thru “sign language”. I then immediately remembered Sally telling me she had the same kind of moment with Willow, only she was at the shops, and everyone kind of looked at the lady telling her daughter to stop yelling at her, when to them Willow hadn’t said anything at all. The joys of a non verbal child, but isn’t it amazing how they still can get their point across.
The biggest highlight of the last 2 weeks is that our Princess, has learnt to pull herself to standing, unassisted. So exciting…..its been a long time coming, one that very early on in Veronika’s life I thought would never happen. We saw our Physiotherapist yesterday, and she was rather excited. She has been on the journey with Veronika since the early days, and is very excited to see how well Veronika is progressing. She gave us a few more hot tips, to develop her core strength, which will hopefully help her to become stronger. We are also working on an adaption for the pedals on Veronika’s little push trike, so we can go for ‘rides’ and keep her feet on the pedals so she learns that’s how you get the trike to move. The other big thing that Veronika’s physio is helping us with is a bigger pram for Veronika. She has grown so much in the last 3 months, and is getting too tall for her pram. We have talked a lot over the last couple months about if we should go for a wheel chair over the pram, and recently came to the decision that at this time a pram is more suitable. Veronika is still little for a 2 and 1/2year old, and the benefits bigger pram V’s wheelchair have swung the way of a pram.
Veronika has had both feet plastered to make foot orthotics, one for her ‘good’ foot, to help stabilize it. Plus a new one for her foot affected by her cerebral palsy, to wear in the hydrotherapy pool. Veronika has been turning her foot out when standing in the pool, and we thougth it would be good to have one that doesn’t matter if it gets wet. They should be ready to pick up next week, so between now and then, my mission is to find some shoes that will fit her AFO in that she wears on her left foot, that are light enough because of her low muscle tone. Veronika hasn’t really worn shoes before as she has such low muscle tone, that they are too heavy for her little feet. So that will be an interesting challenge…..
Our family also managed a weekend away over the weekend just gone. We haven’t had a weekend away since we had Veronika, so it was lovely. We were invited by another friend that I met thru Ronald McDonald house MyTime group(support group for children with disabilities). There were 3 families that went up to Orford, and we stayed at a place on the beach. Delightful. The highlight of the weekend was when the 3 Mummies went out on the biscuit on the back of the boat. Well we were quite well balanced until 1 of the kids said to stop the boat, and of course all 3 of us fell in. I haven’t laughed so much in such a long time. Well at least we could laugh at ourselves, along with everyone laughing at us!
To Google or not to Google?, That is the question…..Last October when we saw Veronika’s paediatrician, I asked if we could see a baby neurologist. I was shocked when the Paediatrician straight away said, “Yes, I don’t see why not”. Why shocked you may ask. Usually I have to go thru my list of what I call, “Yeah, but….”. I think she noticed I was shocked too, as she gave me ‘that look’, to which I replied “that was easier than I thought it would be”, and “don’t you want to know my ‘yeah, but….’ list.” “OK” she replied…..
Well I think that we are doing everything that we can possibly do to maximise Veronika’s potential, but what if the baby neurologist has 1 little piece of information that could make all the difference, and the brain injury specialist we see, has been very honest in telling me that he doesn’t know how to treat Veronika. He hasn’t seen a baby with Down Syndrome and Hemiplegia before. He has talked with his colleagues on the mainland and they don’t know either.
Of course we don’t have a baby neurologist in Hobart so we would have to wait to she comes to Hobart next(from Royal Children’s Hospital Melbourne) which would most likely not be to next year(early 2011). So I was surprised when we had an appointment offered to us for early December. So went along not really knowing what to expect. Well the baby neurologist was lovely. She had so many questions for me, going right back to before Veronika was born, when my obstetrician noticed she had the bleed in her brain. She agreed that we were doing all the right things, as far as early intervention goes, which was rather comforting to hear. She agreed the only thing that we should do was a foot orthotic for Veronika’s right foot as she had just started to pull up to stand at the couch(as long as we were holding her hands), and when she stands at the couch, her right ankle is collapsing because of her extremely low muscle tone. We already had an appointment at OPST(Orthotic and Prosthetic Services Tasmania), and were on to it. After a complete examination, I was told Veronika is coming along nicely. ‘She has extremely low muscle tone(Hypotonia), perhaps she is the floppy-est baby I have seen for a long time. Her high tone from the Hemiplegia down the left, may in fact actually help in the long term to achieve a more ‘normal’ tone, even though she is having some very high tone and tight times. Maybe in fact because she has high tone it MAY even help her when it comes to weight baring through her left leg and could possibly help her when it comes time to walk’. Of course she couldn’t say either way, but hey, we were told when she was a week old that she would most likely never walk. So of course I was happy with that. There is no real need to see her again, but at the same time, she would be more than happy to see Veronika if I was at all concerned about anything, and I should give her a call and she would be put on the list for the next visit to Hobart, after all she is ‘just delightful’.
So why to google or not to google…….2 weeks ago I got a copy of the letter the baby neurologist wrote back to our referring paediatrician, and THERE ARE A LOT OF REALLY BIG MEDICAL WORDS IN IT. The letter was mostly good of course, but still some really big medical terms. Should I google or not? After all I don’t really want to worry myself sick, when we don’t see the paediatrician to late January. Should I just wait to when we see her and I can ask her what it all means then? For those of you that know me patience is not my best gift? Had a friend come over last week and I asked her……google it. Maybe just some of it. So we did a couple of the words….well she hasn’t had seizures, so I guess that doesn’t really apply, hang on does that mean she is going to have seizures? I know all the doctors we see ask if she has had any seizures, but have never really thought too much about it, until you see it written……so to continue to google or not to google…..where do you stop, going from 1 link to another, to find out what you just read means. Can you ever find out what it really means. Just because its on the Internet doesn’t even mean what I am reading is even medically based, or true……oh I think I have read enough now…..might just have to wait to we see the paediatrician later this month……now to be patient……
Last year I came across a resource called
“What I’d Like You to Know About Me” or “About Me” for short. I was offered to opportunity to create one for Veronika. Its a web based resource for differently abled people, that I can put as much or as little information on as I want. It covers a variety of information from medical, to communication, information you need to know about Veronika when she is in hospital, to people who support Veronika on her Journey. I have found it such a positive thing for me personally to do, as it focuses on what Veronika CAN DO. Some much ‘stuff’ about differently abled people is negative, what they will never be able to do.
Lets focus on the positive, the biggest is that she should not of survived being born, now that’s pretty impressive.
After being told that nothing much else really matters, well I know it does, but I am much happier to have ‘issues’ to deal with. After all that’s much better than not having her at all. Wouldn’t you agree?
One of the pages for Veronika’s ‘About Me’ is ‘What other People Say About Me’.
Well I procrastinated over this for a while. My friends, family and people I meet tell me how adorable Veronika is all the time, to which I now reply “I know” and “Thank you”.
So I decided to take the step and asked my friends on facebook, to leave a message about what they think of her. I had put it out there and left it up to them. Well a couple of days later when I got a chance to look, I was surprised, speechless, over joyed. My friends were taking the time to respond. I guess I felt that people do really care about us, it was really reassuring to know that people have come to LOVE Veronika for being herself. That those who care about her, see Veronika first, the little girl. NOT a child with Down Syndrome called Veronika, or a child with Cerebral Palsy called Veronika, but Veronika, the sweet, amazing, strong, blonde haired beauty she is.
So here are some of the responses,
Michelle: There’s so much to write. She is the most adorable little girl that i have ever had the pleasure in meeting. She has so much strength, courage and determination which she gets from her beautiful family who are always taking her to all of her appointments and it shows because that gorgeous girl is going from strength to strength. Have never known anyone that can move as well as she can, oh and that smile of hers is so contagious. Every time i see a photo of her it makes me smile as she just has this beauty that makes me so happy, happy that she is a part of my life. The camera loves her and she has a natural presence in front of the camera too. She absolutely loves her family, you can tell by the way she looks and interacts with them. I think she is the luckiest little girl in the whole wide world as she has the most beautiful, caring and loving family anyone could ever ask for, just as lucky as they are to have her in their lives.
Kylee you are an amazing mum and a wonderful friend. Not only do you do so much for your family,taking Veronika to endless appointments, getting the kids to school, parent help, swimming lessons, helping the boys with their homework and reading and doing the housework you still always have time for your friends. I am so thankful that i have you, Marcus, Jordan, Jakob and Veronika as my friends.
Denise: Couldn’t get a more relaxed ,easy going little girl, and always has a smile, would brighten up anyones day, oh and forgot love her too bits, and her mums not too bad either xxxxs.
Toni: She can do anything – just like her mummy XX
Katie: She seems to know how loved she is… Well who could resist that cheeky smile? And talk about clever… Nothing will be so hard that she can’t find her way round the problem eventually 🙂
Danielle: When Veronika looks at me I get the distinct impression that she knows something I don’t. It’s very calming, like she’s saying “It’s all going to be okay” about life in general. I know how ridiculous that sounds!!
Zonia: Well when u look at her and she smiles at you, you just melt. Cheeky comes to mind too.
Kylie: She is the bravest, most loving person i know x
Selina: That she is a precious little angel who brings joy to anyone who is fortunate enough to meet her xx
Sam: I’d like to say that when I look into her eyes all i see is a beautiful, confident, and exceptional little girl. My only wish is that everybody can see that before anything else.
Juanita: Veronika has the face of an angel, the heart of God and the spirit of a fighter…
Megan: V is here to change the ways of this world, and she is not going anywhere until she has done so.
Rebecca: For me Veronika sees your heart first, she has an instinct/intuition that is beyond her years!! I always feel like the sun just shone on my face when she engages you…
Kelly: She is the most beautiful (and cheeky) princess who lights up the life of anyone who meets her
And Yes I am crying all over again after re reading the responses……..