These two things don’t normally go together but I thought I would give an update on Eli’s progress.
We have started private therapies since Eli aged out of our state early intervention program. We now go to a facility twice a week for his services.
We have been very blessed to not have a lot of extra appointments or doctors added to our life. We know that. Yes, we have additional things we have to do because of Down syndrome but in general we haven’t had the experience of driving all over town for appointments…until now.
I don’t think anyone really told me how big turning three was. I knew Eli would go to school and I knew he would lose services but I didn’t realize what we would be adding. I worried about how it would all work out constantly. But now that we are in it, we have some adjusting to do.
School / Therapy
Private schools and private therapies are crazy expensive. About 6-8 months prior to his third birthday, we began to really dive into our options. My parents have been gracious enough to offer to cover tuition for private school for Eli and Ruby. Obviously most people don’t get quite that lucky and we feel super blessed. Eli and Ruby will both attend a private inclusion play-based preschool twice a week. Eli will attend PPCD three times a week in addition to that. He’s a busy boy! But inclusion was an important component for us and Ruby will definitely benefit from the challenge. If it becomes too much for Eli, we will consider only attending PPCD for him. But for right now, this is the plan.
We have ended our ND program for now. It’s very expensive and Eli is getting so much therapy as it stands. Also, our therapist is no longer coming to Texas so it was time. The universe said so and we accepted reluctantly.
Private therapy has begun instead. We had applied for Medicaid for Eli twice before. Once because we were told that Eli automatically qualified based on his diagnosis. This was false. We were denied twice because the program is income based. When we applied again 6 months ago, our family situation had changed. We have two more children and one less income. The third time we applied, I decided to try for Medicaid Buy-In. This time, it seemed that Eli’s Down syndrome was actually a factor. We were approved for that and HIPP Texas. We pay a small monthly premium for Medicaid and it covers all his therapies. To put this into perspective, we got a phone call from the therapy facility prior to attending his evaluations. The call was to inform us that the three evaluations were going to cost us just under $1,000…which is obviously an incredible expense. Not to mention the cost of attending weekly sessions. But Medicaid stepped in and covered what our private insurance didn’t cover. What a huge blessing! I’m blown away still.
Medicaid doesn’t cover anyone else in our family, which is why I think his diagnosis was a factor here. But either way, all we wanted was to make sure his therapies were taken care of and that we were getting him the best we could offer. He couldn’t go without therapies and while PPCD does work with him, that time is limited.
The private facility offers experiences we can’t give him home or school. They have equipment we don’t have access to and what seems like limitless access to tools and materials we have only dreamt of. It’s also a good thing for my family. It challenges Ruby outside of the house, creates a routine, and gets us out and about. While it means we are less available and busier, it’s a positive overall.
PPCD has been great. We are two weeks in and have already seen some positives. Eli is a little less shy and more flexible. He seems a little more social and is playing using his imagination more. He has said “mama” without prompting and imitating more noises and sounds (including the “lalala” sound which we have never heard before). School is great and we couldn’t be more thrilled. It’s the first thing Eli wants to do when he wakes up and that makes my heart happy.
Health / Supplements
So far, we have spent a lot of time working with our local DS clinic as well as our pediatrician, ENT and naturopathic doctor. This seems to meet all of Eli’s needs for now. Our big focus has been on his thyroid and growth. Eli has high vitamin A levels and we are looking into wycwe are supplementing T3 levels. Because of this, we are stopping all our previously used supplements and looking into other options that specifically target what his blood work indicates is needed. It was a scary thought initially but I have to admit to myself that these supplements are designed to make Eli healthier and beyond that I have seen no difference between Eli on supps and off supps. Has he been healthier? Yes. Does it make him smarter or cure Down syndrome? No. Do we want the best vitamins that his body actually needs? Absoluteky! That extra chromosome means he processes things so differently than we do so I want to get it right.
We have continued cranial sacrial work as well which is great just for sensory if anything else.
The last thing we are looking to explore (slowly) is growth hormone. We know that his height isn’t really that big of a deal and I’m a small person to begin with. If he is going to be small then we are ok with that. But his dad is tall, and Eli at age three is in the same shoe size as his 1 year old brother. So we feel like this is something that needs to be addressed. We will be gathering more research and working with our doctors before making any moves.
There are days it feels overwhelming to have to consider all of this, but there are far more days where it’s worth it because I see how well he is doing and how amazing these opportunities are to make sure Eli is at his best always.
Are we busier now? Yup! But it’s a good busy. We were ready for it and I feel good about these changes (no matter how many times I whined and worried to everyone else). You were right. It’s all good.