Bella has been discharged from hospital now for 4 days and I have to say she is definitely getting back to her normal self. She is constantly shouting and screaming for attention, never stops saying "da da da da da da da da da da" and finally is starting to eat a lot more than she has done the past few months. Both me and Amanda have no idea where she is putting her food as she takes a solid feed along with about 90ml of milk every 4 hours or so LOL let's just hope she keeps it up so she can start gaining some much needed weight!
Yesterday (17th January) we had 2 appointments for us to Attend with Bella. One being the Physio at Gransha and the other being the Spina Bifida Clinic at the Childrens Hospital in Belfast.
Our first appointment of the day was with the physio at 9:30am. We hadn't seen her for a good few months due to the physio being extremely happy with Bellas progress, and also for the fact that we where carrying out the exercises on Bellas legs a few times a day everyday.
When I say about Bellas progress... with her having the disabilities that she has got, she is supposed to reach milestones a lot later than "normal" babies. Bella is 10 months old now and has actually hit all the milestones she is meant to hit apart from sitting and the obvious one of walking. She never shuts up lol, "da da da da, ba ba ba ba," blowing bubbles, screaming, she does the best crawl ever, total army style using her elbows only lol she grabs things, perfect hearing (can hear you tip towing!!) perfect vision.
When we arrived yesterday the physio asked how she was getting on and we explained everything to her about the crawling etc etc and she was just simply gob smacked. She couldn't get over her crawling and just how much she is progressing. She actually said to us, that she wishes she could introduce other parents to her just to show them how good she is and also what is achievable of their children with the right amount of effort put in. Which put a huge smile on both our faces!
Overall she was very pleased and just told us to keep doing what we where doing with her because what ever it is, we're doing it exactly right!
We have another appointment with the physio in February sometime, but this is to get Bella some sort of support for her back to help her sit up as she is still yet to sit up. Both me and Amanda reckon it is to do with the way that her legs are constantly, and that it 's stopping her from balancing herself correctly, but we will find out more next month.
Second appointment of the day was in Belfast at the Childrens Hospital. This appointment was arranged due to the legion in Bellas back being sore when any pressure was applied to it.
Before we set off Amanda rang the Childrens Hospital just to confirm the appointment was then and also the time. Surprise surprise, they had no record of Altnagelvin making any appointment for Bella to attend the Spina Bifida clinic. Howver they did manage to add us on to the list.
Our appointment was made for 1:30pm and as per usual Amanda likes to leave 24 hours early just to make sure we don't get caught in any unwanted traffic bla bla bla
We arrived 23 hours early and decided to take a trip into Ikea to get some bits and pieces for the house. All I have to say is holy fuck! It's absolutely HUGE I can actually say I don't think I've ever been in a shop so big in all my life LOL Could of spent a clean fortune in that place, so much cool things, furniture, pictures, tv cabinets childrens bed stuff lol A trip has been arranged for the end of the month!!
Anyway, we arrived to the hospital at about 1pm and got Bella fed, watered and catheterized before the appointment so we where making good time.
The consultant called us in and asked us to explain our concerns with her. We told him about her being unwell the last 2 months, more bad days than good, her legion on her back being sore when pressure is being applied, the Fontanela opening up again after being closed and the slight leakage from her back (we are still not sure whether or not the back was leaking or whether it was just sweat).
He examined her, looked at her back, checked her Fontanela and did all the normal checks he would normally do!
He turned straight round and just said she's perfectly fine, he has no immediate concerns regarding her shunt, her back, or her general health.
He did explained that when a person is sick (not just a baby) their body builds up white blood cells to fight the sickness, that is why when you are sick you feel alot more "pressure" around your head and your body in general. We don't think nothing of it, and we (adults) don't really have any tell tale signs of this happening, it's just natural to us. However in babies, because of their Fontanela this is actually a way of telling that your baby is sick or has a fever. This will seem to have closed over. The younger the baby is, the easier it is to tell this. He also said that the Fontanela doesn't close over completely until the baby is 13 months and older.
Also, because of Bella have the legion on her back (this will never fully heal it has excess skin and also heavy scarring) when she gets sick all through out her life she will feel pressure in her back.
I can't remember exactly what he said regarding the reason to her always going to have a sore back when sick, but it was something to do with the build up of fluid in her brain (which we all have).
All in all it was a totally successful day with Bellas appointments, and both professionals where more than happy with how she was getting on and her progress!
Today she is really really buzzing! She's in great form, and seems to be well and truly on the mend.
I'm going to put up a few videos of her over the next few days until I can find something else to write about. I still have to do the post on when we found out about Bellas Spina Bifida, but I'm going to need Amanda to help me with that!
Until next time, thanks for reading!!
