Well the last few months have been a little crazy trying to get adjusted to running around so much. Now that we’re getting in to more of a routine its starting to get easier. If I don’t work we only have $50 a month for everything – groceries, gasoline, etc. We’re really lucky because most of his therapy is provided for free but we were definitely not prepared financially for having a child with special needs. Between the extra cost of formula (Max isn’t able to eat and we buy organic because I really don’t want any extra chemicals in his body considering his body has enough obstacles to contend with), the extra gasoline for running around, the extra bribery items for Milan (say what you will, but a tired 3½ year old sometimes just won’t cooperate unless there is a big enough incentive and mommy only has so much patience since she works at night), and the more often than I’d like prepared meals (either from restaurant or grocery store) I really wasn’t prepared for the extra hit on our expenses. I can’t even imagine what it’d be like for us if there weren’t government sponsored programs to help us. We’d truly be destitute.
Max has physical therapy (p/t) twice a week, occupational therapy (o/t) twice a week, feeding therapy twice a week (I know this normally just under the O/T but Max has pretty severe issues with feeding so he’s been approved for additional therapy that focuses solely on feeding) and infant stimulation once a week (its technically 2 sessions at one time). I’ve managed to get it all to fit in Mon-Fri. But the one thing that has been hard to incorporate on a regular basis is the DNS. It only takes 10-15 minutes for me to do it at home but it is hard to find 10-15 minutes sometimes!
I do find that when I can do the DNS exercises at night right before Max goes to bed, it seems to have a better effect (although sometimes Max doesn’t sleep as well – I think because his brain is still working too much). I have also found that if I do it too regularly it doesn’t seem to have as great of an effect. Or maybe it does and its just not as noticeable if I do it more often.
Either way, he’s improving a little bit all the time. Every week our p/t therapist is amazed at how much Max has improved over the previous week. Its hard to say what exactly is working the best but I know I don’t want to change anything up too much since there is steady improvement.
If only the improvements were some of the big milestones. He can roll all the way over now, but he won’t because he REALLY does not like being on his tummy. He still can’t sit up unassisted – well, technically he can sit up but when he gets excited he flings himself backwards so he still needs to support to keep him upright. We finally splurged and bought a used Stokke Tripp Trapp Highchair with the baby set and I’m so glad we did. He definitely sits better in this than anything else we have.
Another super simple thing we got that has helped a lot is the Leachco Wrap Strap Anywhere Safety Strap, Red. Its such a simple thing but we’ve used it lots of places, not just in the shopping cart. And its so small that it fits easily in the diaper bag so I always have it with us.
One of the most important things that has happened is that both my husband and I are in a good place with the situation. If given the choice I will always want Max to not have brain damage, but since that’s not a choice I really don’t think about it. This is our life, and this is our challenge as a family. Its not the end of the world and we’re so lucky that there are so many resources available to help Max. Max is a really happy kid, he’s a hard worker and is improving. Seeing your kids happy is really the only thing that matters, everything else is just circumstance.