Been a while since I blogged now, been pretty busy being summer holidays and that.
We seem to be fighting a losing battle when it comes to the specialists so we’ve taken a few different routes in trying to help Jennifer. We have been promised a rehab team to help her with her problems, that team should consist of physio’s, speech therapists, nutritional therapists, occupational therapists and so on all combining together to produce a plan, set developmental goals, confer between us and other government bodies such as social security, day care and most importantly doctors, easing the burden on us slightly.
We’re in need of someone who we can coordinate things with, ring to find out results or have those results explained. I have no idea who has responsibility for Jennifer, and I’m sure no one else knows. Well, I guess it’s us as parents who have to follow-up all test results, even though we’re the last to receive them and Odrun has to get out the nursing bible to interpret the jargon…..It’s a part-time job in itself.
Emma and I made some pictures for Jennifer’s room. Cheap and it was fun for Emma, she gets to be a part of her sister’s development and Emma loves that stuff. Emma’s home on holidays now, think Jennifer really enjoys the break in monotony…Emma runs in to us and says, “Jennifer’s smiling at me”! Emma sings for her and tickles her, not always so popular but most of the time it’s smiles and laughs. You just have to ask Jennifer if she wants to sit next to Emma and she’ll give you a big smile. Jennifer’s become more tolerant with Emma now, I think she really enjoys the company!!!
Have been lucky enough to sell a few books and have bought some things on eBay, some high contrast wrist bands with bells in them, and a disco light for Jennifer’s room. We have moved her downstairs now. Bit of a hard decision but one that has to be done sooner or later….only reason it’s hard is because I had to save her from choking in the middle of the night one night, she was gasping for air and I picked her up, turned her around and gave her a little hit between the shoulder blades, a huge clump came out, reflux at it’s best!!
We’ve also received some textured pads, great for exploring different surfaces. Jennifer probably only uses her hands to suck on, that’s the only thing I can say she means to do with her hands. But she likes these pads, a disabled person will touch maybe 5 different surfaces in the same time as a “normal” person will touch 200……hopefully she’ll catch on soon.
Jennifer’s reflux isn’t getting better, in fact I think it’s getting worse…..or maybe we’re just so sick of it?!! Dont’ know. We actually had to take her down to Haugesund one day because it was so bad that we thought her shunt could be malfunctioning, it wasn’t but we at least got to talk to a doctor who we have had some good experience with. He was willing to allow us to call him if we were in desperate need of some advice. Nice, we need a contact person who knows Jennifer. We’ve increased her medication, but it hasn’t helped.
I did however manage to get an appointment forwarded from September the 10th to July 17th for a follow-up on this reflux. It took a while and I thought we wouldn’t get it done so we tried an alternative in the meantime…it’s affecting her behaviour now as I’m pretty sure she’s getting a sore throat and esophagus, some days she needs her dummy almost all day just to keep her quiet…she can be in pain most days, it’s hard to watch and there’s not a thing we can do about it…
It’s strange how your hope can suddenly be lifted by an alternative idea. We are struggling with the traditional health system so we’re trying some other things on the side. Reflux in brain-damaged infants is common, and sometimes cannot be cured. But if we were to just give up and say, ah it’s the brain injury it can’t be stopped, we might as well just join the doctors and their 3 o’clock cake party…..
Acupuncture, while not being the traditional method, has been proven to work. Not that strenuous for either part involved and doesn’t really cost that much seeing as it’s local and we spend twice as much traveling to Bergen. Definently helped, but certainly not cured!
Jennifer’s VER test results are sent all around Norway, and I’ve had to ring half a dozen times chasing them up. They won’t tell me the results over the phone, they want you there in person or they’ll send it by snail mail….could save some time and send them via email…….I still don’t know where they are, they said they’ve sent them to our local GP but he hasn’t got them. Ridiculous!
Not sure what’s happening with her eyesight, it doesn’t seem to be improving and has actually started to become quite irregular, what we thought she saw before has kinda disappeared, and now she never makes eye contact. When we approach her she turns her head and uses her ears to monitor where we are, gives us a big smile but never makes eye contact. Maybe she’s realised that it’s easier….don’t know though….She reacts positively to new environments, and definently notices change with her eyes but I just can’t put my finger on it yet. If anything she can see objects at a distance, but anything closer than a meter I think is just a huge blur….
We keep stimulating her with toys and an app I downloaded on the iPad, the disco light catches her eye, she follows small lights around on the wall, or at least looks at them. She gave a huge smile to the Teddy bears on her book shelf…..so there’s still hope there.
Our physio has got our local GP to send a referral to a rehab team in Haugesund, they’re on holidays now and they’ve sent us a letter stating they’ll send us an appointment in August.
Thank god for our physio, or we never would have had this help. She’s getting a council worker who works with challenged kids to come and help us get Jennifer into day care, we’ll meet up with the her a few times before Christmas (Jennifer will start after christmas) and we’ll get to meet Jennifer’s physio at day care. The day care system is a really good system, second to none I would suggest. I guess it makes up for the fact that there is no specific center for children with disabilities, only the hospital…..She will also help us out with our work situation, and probably some kind of carer allowance….if there is one positive thing about having a sick child in Norway it has to be the financial support, although we would be much better off having 2 healthy children and working like we have done, we’re not gonna lose our house or starve while we’re giving Jennifer the best possible chance early in her life.
It’s becoming more important each day now, she’s falling way behind, she’s a long way off just rolling over and still hates laying on her stomach, being held or even riding horsey on our knee. She’s become comfortable in a chair, and we don’t like that. She is no way near as happy as she was a few months ago, I blame that on her reflux but still, you don’t wanna see your child go backwards, however they may be.
The look on people’s faces when they see her is hard to see, I think from all the pictures around Jennifer looks completely normal, but when they first see her I think it’s a bit of a shock. She’s no freak, but seeing a baby of that age who doesn’t make eye contact can be pretty disturbing.
It’s likely that she has epilepsy too, a doctor explained it to us and asked if we had seen any signs. We weren’t aware that epilepsy could be so mild, it can in fact occur without symptoms. There’s a link to a video of Jennifer being happy, a rare occasion lately, at the bottom of the page. Around 50 seconds in, she turns her head to the left, her eyes flutter and she’s non-responsive for a few seconds. It’s possible that that is an epilepsy attack. There’s no follow-up planned but after we were told how mild they could be we’ll have to let them know at the next developmental check-up.
Jennifer is Jennifer for us, she’s our gorgeous little girl who brings us joy in the same way a normal baby does to their parents….but I have to admit the jury’s still out on her. Sometimes she’s as quick and responsive as other kids, sometimes there seems to be little going on…..Her right side seems to be getting weaker, even though we stimulate it more than her left. When she’s tired, when her reflux is playing up she’s a totally different baby…. she’ll just lay there until she falls asleep. If someone see’s her at that time of day they’ll get a major shock.
I can’t help but think what if, what if the gyno had of seen the malformation the first time Odrun went in, not week 16, but when he saw the amniotic fluid the first time. What if it hadn’t of bled…..I’m not blaming anyone……my daughter looks past me when I sit next to her, she’s in pain most of the day, I look into her eyes and imagine what if…..it gives me hope, it makes me tolerant (sometimes) and it gives me the will to do everything I can for her…..it’s not her fault…..
All we want is for her to be happy and comfortable, and to be the best person she can be…….isn’t that what all parents want for their children?