High 5 for high chair!

Trying to stand for his beautiful social worker!

Luca is going to Harvard! That’s not a sentence I ever thought I’d type (twice). 1) because I was preparing myself to say goodbye to Luca in the first two years and 2) because we live in Australia. But its true. Well, his, mine and husband’s DNA is going to Harvard.

A few weeks ago, after 18 months of research, a Dr emailed us with the following  deflating words:  “Unfortunately, I was not able to find an answer for you.” We still stay in limbo land. We will still see Luca as having a Mitochondrial disease, but from the 4350+ genes they studied/tested- they were/are unable to find the gene that is mutated or causing the issues. This puts Luca in the “rare disorders” category.

With that news, came the almost hopeful news of them sending off the DNA samples to Harvard for further testing. In the past, 10-20% of parents who have gone down this path, that have had a negative result in Australia, are given a result. So, theres a chance. I guess the type of “chance” I’m looking for is… just a label, name or number for what he has. To feel like I have some control or answer… even though I won’t have any.  This is positive news. It makes me feel like I’m doing something-even if it doesn’t achieve anything. We should receive results in 3-6 months.

While the positive wheels are turning,  that in the past two weeks, Mr Strong (Luca) has been sitting in a high chair at his grandparent’s and Nonni’s houses. He sits there without flopping his head forward for over an hour. Its amazing. We don’t sit him in a highchair at our house because I PUT OUR HIGHCHAIR ON THE NATURE STRIP FOR RUBBISH COLLECTION…. YEP, another one of those emotional moments where I thought I’d never see my son sit comfortably in a highchair- so chucked it out! (I’m a chucker, not a hoarder) I will be going to Ikea soon to collect another one. This changes so many things- mostly- when we go to a cafe- we can say “yes, we need a highchair”- not “no thanks, he can’t sit in a high chair”. Also means we can fit in teeny tiny cafes. Its all about the cafes. #brunswickhipstermum

As if sitting in a highchair wasn’t a big enough achievement, he hass been going from knees to feet while holding on to me. He’s really doing his best to try and stand. Our phsyio thinks he’s definitely going through the motions that are needed. Yesterday, he had a hip X-ray to see whether his hip bones are in the right spot to allow him to stand/walk physically. We will find out in the next few weeks what those results are.

In the next few months, we have the following appointments:

• Orthoptist- to check his vision
• Metabolics- see if they have any other tests or something for our boy
• Neurology- EEG and check up to see whether he’s still having seizures. (If not, he’ll probably come off the medication!)
• Dentistry- check up and also see how much damage he is doing when he’s grinding his teeth so much.

(Soppy warning) I’m so madly in love with my little boy. He’s just the softest, cuddliest, slowest moving, quietest & gentlest creature on earth. I know for a long time I tried NOT to fall so in love with him because I was preparing for heart ache. Now, whatever happens, happens. This is my boy and I love him with every part of my body and soul. He’s going to Harvard. I’m so proud.