Big, Long Update

 

What’s up with us these days? Here’s where it’s hard, where it’s been good, with a little bit of learning sprinkled in.

Teeth:

Can you pray for Leo’s teeth? And for how we handle teeth grinding? We moved up our dentist appointment for fear of damage to his teeth. Few things in Leo’s life have left me feeling more helpless. It is beyond infuriating to hear the grinding and be able to do nothing to stop it. If I start to think in terms of preventing it I assure you I will go crazy.

We do think through, “What is he communicating? What does he need?” Teeth grinding is often a request—or need—for oral stimulation. One therapist suggested that maybe it’s Leo fidgeting. You know how you and I might tap a leg or twiddle thumbs? Well, his teeth are really the only two things that he can control bringing together. Does that make sense? He can bring them together and create stimulation. He can’t really do that in other ways. We also definitely notice teeth grinding when Leo is in pain or discomfort, not solely pertaining to his mouth. His digestion issues tie in to this, too.

It's really frustrating to witness something, know that it can cause him harm, and be helpless to stop it. And then, in some instances, to help keep it from happening and not adopt the mindset, “Well, I can’t stop it anyway so why try at all?”

I. struggle. so. hard.

Brad does, too. Different situations are more difficult for each of us. Trying to help the other person in the midst of their frustration is difficult, too. (Yeah we just had a rough morning because I was grumpy about Leo’s teeth and Brad was being kind to me. I know. It doesn’t make sense. But I was not appreciating anything he said. Sometimes when you’re grumpy, it’s not about what the other person says, it’s about my resolve to be unpleasant and dissatisfied. So, yeah, I was grumpy.)

Weight:

Leo’s still puking. But there’s less quantity in his pukes on average (he can still have some bad/big ones). He really seems to be growing. I haven’t weighed him and we haven’t seen GI, Nutrition, or pcp recently. I anticipate a lot of anxiousness when those appointments come up. And I have definitely avoided weighing him.

I get so anxious.

I know that it’s not a personal statement on me. But it’s so hard for me to separate what I do from the outcome in this area. It’s been SUCH a ride (shout out to all you who have been here from the beginning). I know that it makes sense for this to be an issue for me, but I still don’t know the best way to address it.

Taking in information about Leo’s weight and eating habits is hard, too. I find myself saying in my head, “Yeah, but you don’t understand what it’s like to do this day-to-day,” when a medical provider (or my husband) is talking about changing something or trying something new. I’m not proud of that response. And I don’t want to communicate that those people are pushing too much and shouldn’t be speaking in to this. I let Brad know if I’m too overwhelmed to talk about something like Leo’s eating. And some medical providers will ask talk about Leo’s eating and I’m able to take what works and discard what doesn’t. My point isn’t that people shouldn’t be speaking in to something. My point is that to live in such a way where no one can speak in to something and help is dangerous and not how I want to live. And I find it hard in pretty much any conversation regarding Leo’s eating. So it’s something that I’m working on.

I didn’t mean to include so much of this, but can you tell that taking things personally is a bit of an issue for me? I am definitely very sensitive and I enjoy many strengths that come with that. But I am also learning to work through the situations where I feel that someone is saying that I have done something wrong when they’re not making a judgement or value statement about me at all but maybe something that I did. That’s just a little tid bit of personal reflection in here that I was not planning on including, haha! But, some mom might relate and feel a little less alone. Our weaknesses or flaws or ugly areas, they’re not reason to carry shame. We’re all works in progress and none of us reach the end until heaven.

Therapy:

I look forward to therapy! I love Leo’s therapies!

So, a lot changed after Leo turned 3. And some things didn’t. I’m sorry, I forget exactly what I shared on here. We are attending three therapies at Schreiber. We are able to see some of the therapists that we saw through Early Intervention at Schreiber. We kept our physical therapist, an occupational therapist (the pool), and our speech therapist.

The short version of the transition to the IU is this: we will be doing physical therapy twice a week, speech therapy twice a week, and vision help once a week. The plan that the IU came up with for Leo was to emphasize physical therapy (PT) and speech therapy (speech) because our main goals for Leo have to do with communicating! In order to communicate, he has be tolerate positioning, which is a stander or a seat so that he can use whatever communication device. The IU also said that at this point occupation therapy (OT) and PT would be doing a lot of the same things. So, if/when our current physical therapist sees a need for occupational therapy to start up, she’ll start that process (with our consent).

So, the long version behind our thinking/processing all of this: 1) I love that the IU is taking the approach that not ALL therapies have to be done ALL the time. 2) Seeing therapists at Schreiber gives us wiggle room if we feel that the IU plan is lacking in areas. 3) We have time to figure out what going to a school or preschool looks like for Leo.

This process has been weird for me. Remember, little miss sensitive over here? I felt like people at CHOP and the PCP and sometimes therapists were communicating to me very strongly, “YOU have the right to _____ for Leo! You can ask them to do something differently! Don’t let them tell you that they can’t do ______! YOU need to advocate for Leo! They are able to provide for him!” They being the IU. I felt a sense that the IU was going to try and cheat me out of what we deserved…or something like that. I must emphasize that this is how it felt. The people who we talked to about the transition to the IU were not trying to scare or bully me into something.

They were trying to make me aware of what we can expect and of all of our options. We live somewhere where there are a lot of resources for someone like Leo. What a blessing! Seriously. And our team has done their best to make sure that Leo is getting the best care. I just had to realize that they were doing their best to put ALL of our options in front of me, and we needed to pick through what worked for our family.

I also wrestled a bit with not putting Leo in any sort of school yet. I’ve heard that many families have really appreciated what preschool can be for kids like Leo. They’ve gained some freedoms and also appreciated their kid all the more. We were also warned that sometimes home visits with the IU are harder to staff. For example, if Leo were to go to a school where an IU therapist was already seeing a kid, it’s easier for them to add Leo. However, adding a new kid in their own home is a whole different situation to staff.

Wouldn’t you know it, we are waitlisted for IU’s speech therapy because they do not have a speech therapist with the capacity to add us. I was warned about this! You would not believe the voices in my head telling me, “Charis, you suck. Your kid isn’t going to get the therapy he needs because you couldn’t pull yourself together and figure out how to put him in a school.”  BUT, because we see therapists at Schreiber as well, I assess that we have wiggle room. We are seeing speech at Schreiber! It’s ok that he’s not seeing IU speech yet! It's important that Leo’s plan for the IU shows that communicating is important and shows the things he is working on. But we’ve got down what we are working towards and we are still able to see speech at Schreiber.

I feel like even writing this in the update comes from a little bit of a place of defending myself because I’m trying to prove to…somebody!...that I am right in not putting him in preschool yet. I know I don’t have to defend my decisions. I know everyone is figuring this stuff out. I also know I’m not the only one to deal with those sorts of voices. So, hey, maybe someone can feel less alone (neurotypical kid or not).

Back to…oh yeah, how therapies are actually going. I enjoy our therapists so much! I look forward to Leo’s therapies. His therapists are sometimes my therapists, listening to my rambling of the day. They are friends. AND, we only have therapy THREE MORNINGS a week.

Let me explain why this is significant. Before we were having therapies about 4 days a week, and I think one of those days was two or three therapies in one. We had afternoon and morning sessions. So we saw PT on Tuesday at 11, Vision Wednesday mornings, went to Schreiber for OT and PT Wednesday afternoons, and then OT on Thursday morning and PT on Friday afternoon.

Cut to the present. We go to Schreiber for PT on Tuesdays. Vision and IU PT come to our house Wednesday morning—so that’s two therapies at one time—for an hour. And Thursday mornings we go to Schreiber for speech and OT (the pool) with time in between both sessions to change. We have Monday and Friday completely free of therapies! Also, the fact that all of them are in the morning—either before breakfast or right after—really makes a difference. I can plan things for the afternoons and not have the day shot because we have to do a meal around therapies and have to go there and back in the afternoon. My social heart finds it easier to get together with friends or just go for groceries when we can get therapy done and have the rest of the day.

I’m very grateful.

Also, he’s kickin’ it. He’s winning over hearts, charming all the people, and working really hard. He’s been doing tummy time stuff and working on sitting, playing with toys, swimming, trying an eye-gaze device, and practicing the stroller a lot. He’s just a lot of fun and we have fun in therapies most of the time.

Summer:

We have a couple of trip things planned for the summer. We are trying to travel a little bit (in country) but not run ragged the whole summer. As I just said, we are very much enjoying where we’re at. It’s encouraging to be able to do trips. I remember when Leo was born, I really felt trapped. It was so hard to imagine being able to have what he needed outside of the house. It’s deeply encouraging to do a trip and see that life with Leo looks different, but it can also still be the same. In some ways, Leo is a totally not normal kid. In some ways, he’s a totally normal kid.

Prayer and praise would be appreciated as Brad and I are planning on getting away for THREE nights! We have wonderful family and friends who are coming together to be with Leo. We have a couple of different people that will be watching him. They also will have our night nurse for two of those nights so that’s a big help, too! We are looking forward to time away. We know it’s good for Leo, too, but he’ll be fussin’ for us for sure (pray for those caring for him😊). If our relationship isn’t good, then it’s not good for Leo either.

 

Ok, I think that’s all I got for now. That was a lot more than I planned to write when I sat down haha. We are grateful and blessed. We are eager to share God’s blessings. We are confounded by the community that God has put around us who share in Leo’s journey.

G’night!