Tuesday, 12 March 2013

Therapy and Doctors

Enjoying the sunshine
Considering it's been a 40 degree (celsius) day today, it's been a busy one for us. This morning, before it got too hot, we decided to pack Felix, and all three of our dogs, into the car and go to the dog park. It was already pretty warm, but it was beautiful to be out in the sunshine. The dogs went crazy, and ran themselves ragged, chasing the balls and each other. Felix though it was great to have a huge, grassy oval, to walk on. He enjoyed throwing a ball to the dogs, and then running after them. It's beautiful to watch him having so much fun.

Later, Felix had an Occupational Therapy appointment. I appreciate that his therapist is able to come to the house, for Felix's session. It makes him feel really comfortable, being in his home environment, and it makes it easier for me too, with one less place to have to take him. Felix was in a funny mood today; he hadn't had a sleep so he was being a bit naughty and showing off. As soon as his therapist arrived, he turned his little activity table upside down, and then tried to tip his table and chairs upside down as well. It's hard to keep a straight face when he gives you a cheeky look and then proceeds to do something he shouldn't. I told him off, and then managed to distract him by asking him to come and draw on his chalkboard.

Chasing the dogs
The therapist is very pleased with Felix's development. She believes that his fine motor skills and his cognitive ability is pretty much on par with other 'typical' kids his age, which is wonderful. His gross motor is more delayed, due a lot to his hypotonia (poor muscle tone). She is hoping to do an assessment, along with a Physiotherapist and a Speech Therapist (if there are any available here, due to a lack of staff), in about a month's time to see where he is at developmentally across the board. I'm not a huge fan of assessments, due to the comparative nature of them, but I am keen to see which areas Felix is more delayed in, so we can focus our time and energy on those things, and less on the things he's doing well in. I think it will help us be able to fine tune his therapy and see what we really need to concentrate on.

Wearing his favourite hat from his Papa
In the afternoon, Felix had to see his Paediatrician. It's been six months since we've seen him, so we had to catch him up with all the latest on Felix, including his ears and possible hernia. We also had to get a referral for him to have his next MRI to check on his hydrocephalus (fluid on the brain). If the levels of fluid have remained steady, since his last scan a year ago, we won't have to worry about another MRI for about five years, which would be awesome. We're hoping for a good result! I just thought I'd mention that hydrocephalus and Down Syndrome are not linked to each other. The hydrocephalus occurred when Felix was still in the womb, totally separate from the fact that he also had an extra chromosome. The Obstetrician and Paediatric Neurosurgeon, as well as the rest of the 'team' who met regarding Felix (when I was pregnant),  had never actually come across another baby with both diagnoses.

The Paediatrician did all the usual measurements today. Felix has only put on 200grams in the past 6 months, and now weighs 9.2kg, at 29 months old. He is 81cm tall which, even on the Down Syndrome height/weight chart, is really tiny. All our other kids were very petite too, so we're not worried. He eats well and sleeps beautifully, so I think that's a good sign. The Paediatrician isn't quite so convinced. When Felix goes for his MRI, he's going to get them to do complete blood work, and test for Coeliac Disease as well. He just wants to eliminate that as a reason why Felix may not be gaining weight. He said that even if those tests come back clear, he would like him to see an Endocrinologist to rule out other possibilities. I'm fairly sure everything will be totally fine and he's just going to be a little guy but, hey, who am I to argue with the Professionals?
Cooling down, at the end of the day,
with his dinosaur

Felix had his ears checked, yet again, by the Paediatrician. He had all sorts of problems trying to get a visual of his eardrums. He could only partly see his left one (and he couldn't see the tube the GP saw last week), but he couldn't see his problem right eardrum at all. He commented that Felix has highly unusual shaped ear canals. He now joins a long list of Doctors and Specialists who have said the same thing. Felix was an absolute trooper, and didn't even flinch with him poking around in there. He's getting quite used to it, I think. We will keep putting the bicarb drops in his right ear until he sees the GP in a couple of days. Hopefully, by then, he will be able to get a good look.


  1. Hello there, I have just recently found your blog. Felix is so adorable!
    My youngest son Levi has down syndrome also. I was writing because when Levi was in my womb he also had extra fluid on his brain and they told me this was a marker for down syndrome along with my blood work. Levi's fluid resolved before he was born. We prayed for because that was the scarest part for us. Did Felix resolve before he was born or after? Thank you for sharing.

    1. Hi Jody,
      Thank you for stopping by my blog. It's nice to 'meet you' :) How old is Levi?

      The fluid on Felix's brain was first detected when I was 21 weeks pregnant. There was so much there that they told us it would be fatal, so each day, feeling Felix move inside me, was such a blessing. The fluid continue to increase until I was 28 weeks when it stabilised (still very high levels), and he was born at 36 weeks (with a Paediatric Neurosurgeon waiting to intervene). When he was born, he was doing so well, there was no need for any intervention. He still has high levels of fluid on his brain, so it hasn't actually resolved, but it hasn't had any affect on his development, thankfully. Looking at his MRI, and then looking at him shows that he is a miracle. The pictures on the MRI contradict how well he is developing...it's awesome!!

      So did Levi's fluid disappear before he was born? I have heard of that happening...that's fantastic! Does he have any other medical issues?

      Thanks again for reading my blog. I'd love to hear all about Levi :)

  2. Hello :)
    That is so amazing! Felix is so cute. I'm so thankful that he is doing so well.
    Levi is 17 months old. He is my little cutie pie! Yes, his fluid was detected at about 18 weeks and was there until sometime around 31 weeks that it resolved. It was a true blessing. They were telling us all the scary things they were telling you about maybe being born dead. We were doing a lot of praying. He is doing very well except we are having some troubles with his ears. He was having constant fluid in his ears so we had tubes placed at around 10 months. We were worried about hearing for him. Now he is having issues with the tubes being filled with dried tuck. So we are having to get his ears wet. He still isn't passing the hearing test completely.
    I really enjoy reading about your little cutie :)

    1. Oh wow! That sounds very much like what happened with Felix, except that his fluid is still there. At least it's not causing any problems at the moment though. You would know exactly how we felt during my pregnancy with Felix. It's hard being given such an awful prognosis! I'm sorry you had to go through such a frightening time with Levi, but I'm glad he is alive and well, and bringing you so much joy!

      His ears also sound similar to Felix's. He had tubes put in last December, but has had just as many problems since. He's had so many infections and one of his tubes has already come out, unfortunately. We're lucky because he has never had any problems with his hearing. He failed a couple of tests as a newborn, but has passed all the rest. I hope things improve for Levi and he passes his next hearing test. It must be a worry for you. Do you sign with him yet? I'm really glad we started it with Felix, because he uses a lot of signing to communicate now. Levi is probably at a perfect age to start, if you haven't already.

      Thanks for writing and telling me a bit about Levi x x x

  3. Praying for the fluid to get out of Felix's ears. Thank you, my Levi is my sweetie. I am doing signing with him. He knows the sign for more. The signing is new for me, but we are learning right along with Levi. I also have three older children. My daughter is 16, and J have two older boys age 8 and 4. They just love there little brother so much.
    Keep writing about your little curie. We will be reading and learning. :)

    1. Thanks for your prayers for his ears. We are going back to the Doctor this morning for another look at them. I'm glad you're signing with Levi. It's funny how they often learn how to say 'more' first. It was one of Felix's first signs too :) We didn't know how to sign before Felix was born, so we're learning along with him too. I think he learns them more quickly than we do...hahaha! The way we choose which signs to learn, is by looking at the things Felix is really interested in, and looking at words we use all the time. They are the ones we concentrate on learning.

      It sounds like your older children are great with Levi. Siblings are so important! Felix loves his older brothers and sisters too. He has 7 older siblings, Brothers, 23,18,16,14 & 13 and two sisters, 21 & 20.

      Much love to you and your family. A big hug for Levi, from Felix :)

  4. Thank you, Levi sends big hugs and messy kisses to Felix:)