Sweet Lydia

Are you ready for another wellness post from our family? To be completely honest, I am not sure if I am up to writing one. But this blog, is first and foremost, a journal of our family. And our journal would not be complete without this.

So, buckle up, it’s going to be a LONG one! 😉

Plagiocephaly

How is that for a spelling/vocab word?! That is just a fancy way of saying flat head.

When we took Lydia into our pediatrician for her sixth month wellness visit, our pediatrician was concerned that her head shape was not looking great. She had developed quite a flat spot and preference to one side.

This has happened, to some degree, with each of our kiddos. Jacob actually had it the worst by far – but no one ever brought it up with him! We weren’t really concerned too much about it, but our pediatrician wanted her to start seeing a physical therapist.

Physical Therapy

Doing a few little tricks, Lydia quickly got over her side preference. But as we continued to work with her physical therapist, and as time passed, the concern grew that she just wasn’t meeting physical milestones. It took a LONG time before her head wasn’t floppy, and she was pretty inconsistent with rolling, and took several months before she was sitting independently.

When Lydia was eight months, her physical therapist believed she needed to see a neurologist to help us discover why she might not be meeting her milestones. Basically, both he and I were banking everything on Lydia’s nine month wellness visit with her pediatrician.

Her nine month appointment was so confusing.

To put it simply, I definitely did not feel heard. I am not an assertive personality and maybe I should have pushed harder. But instead of focusing on physical milestones, all our pediatrician focused on was her head shape {which our physical therapist was not concerned about at all}.

Helmet or No Helmet?

We were sent down to Primary Children’s Hospital in Salt Lake to see a plastic surgeon. We really didn’t see this as necessary and this was confirmed. The doctor had probably been in the room for three seconds {not an exaggeration!} before he declared that she did NOT need a helmet.

As grateful as we were that she didn’t need a helmet, we still had a LOT of concerns and we just didn’t know what to do with them.

Child Development Center

The one little crumb that our pediatrician gave us at Lydia’s nine month appointment was a referral to see our county child development center. We made an appointment and she was brought in. They checked her hearing and eyes and she passed both. Then it was basically a GIANT questionnaire that I went through with one of the case managers.

But then, guess what hit the following week? COVID.

Everything went on pause.

COVID and Worrying

Because our pediatrician had referred us to the child development center, and they have their own physical therapists, we stopped seeing our physical therapist. This was actually hard because we had developed a really good relationship AND he was the only person I felt like was listening to our concerns.

So time just slipped by. Most days, I was okay. There were fleeting moments of worry but mostly she was just our Lydie. But things grew increasingly difficult when I would see friends of mine who had children the same age {or younger!} doing things that Lydia was not even close to. I try hard not to compare my children to others, but it was hard not to. I didn’t know what to do to help her.

At the beginning of June, the same day we got Jacob’s autism diagnosis, I finally received a call from our case manager at the child development center. They said, based on her scores from her questionnaire {which were about three months old by now}, she qualified to be evaluated.

Let me just say here, the amount of hoops to jump through is a little crazy. I understand why they exist, but geez, it is frustrating some days.

She had fallen into the concerning/below average range in: adaptive care (this is basically self-care – like being able to hold a bottle on her own), communication, and fine and gross motor skills.

Worrying about Nothing

Just a couple days after we heard from the child development center, Lydia had her twelve month appointment with her pediatrician. I came with all of my notes from the child development center and a lot of worries {she had really made NO improvements for three months}.

This appointment was very defeating. I would like to believe that our pediatrician was just having a bad day, but it was rough. I had to get pretty direct {which is hard for me} to even get him to listen to the results from the child development center.

He then told me the phrase that lingered with me for months…

“You are worrying about nothing.”

I left the office feeling so low. There were lots of tears on the way home.

And to add a little background, just days before this appointment, we had received Jacob’s autism diagnosis. And as grateful as I was for that, I was battling quite a bit of momma guilt about it. Everything that I was reading was that early intervention was KEY and I felt like I had failed Jacob as a mother. That maybe if I had pushed MORE, he would be in a better place. That even though it wasn’t my fault, maybe I didn’t do enough to advocate for my child.

So now here I was with another child, feeling very defeated, and feeling like I was failing her.

That was a difficult time.

Our Concerns

I just realized that maybe I’ve been a little vague about our concerns. Here are the big ones:

• Not progressing – or progressing at a very slow pace – physical milestones. Lydia finally was sitting up independently around 9/10 months. She is inconsistent with rolling. She does not put any weight on her legs – no standing. Sometimes she will for a moment, but it is rare.
• She lacks emotion. She is very content and is not a fussy baby at all. But she doesn’t show a whole lot of joy. She will smile but we have yet to get a belly laugh or anything. We didn’t even get a chuckle until she was 10 months.
• This goes with the above, but there are days, or spurts within the day, when she doesn’t seem quite there. She just seems like she is in another place and it is hard to connect with her.
• She cannot eat anything that is not pureed. She immediately throws it up. We tried several different things when she was around a year old but she would immediately lose them. The child development center told us to stop as they were concerned she could choke so that is what we have done. So she is basically eating the same thing she did at 6 months.

Wynnette

One thing that did change for Lydia this summer, was that we were able to meet with our case manager over FaceTime. The child development center {due to COVID} was still not really up and going and wasn’t allowed to have in-home visits.

However, we were given a case manager, Wynnette, who we would Facetime with every two weeks. Lydie would sit on my lap, but it was pretty much just me telling Wynnette about our concerns and how things were evolving – or not evolving.

As much as I enjoyed these visits they really weren’t doing much for Lydia. They were helpful for me to talk to someone, but that was about it.

Assessment

Finally, at the beginning of September, we were given the “okay” to make appointments for Lydia to be assessed by the physical therapist and speech pathologist with the child development center.

First up, was the speech pathologist. She came and observed Lydia when I gave her lunch. She didn’t interact with Lydia at all and was only there to observe. Lydia got her usual food but still managed to throw up. I’ve decided it was a good thing because it allowed the speech pathologist to see what she is doing.

The next day, the physical therapist came over and worked with her a little to see what she was able to do. Lots of questions for us.

Neither would really tell me anything, and a follow-up results meeting was scheduled for four weeks later. Remember when I mentioned the amount of hoops to jump through?

Pediatrician Joins the Team

About a week after Lydia’s assessments, she had her fifteen month wellness visit with our pediatrician. I was anxious about this visit but had resolved that if I didn’t feel heard that we would try and find another option.

The visit was immediately different than the previous. The nurse came in several times to redo her measurements, especially on her head.

When the pediatrician came in, I could immediately tell that he was concerned. He said that Lydia’s head measurement was actually less than it was three months prior at her twelve month appointment. The head is a little trickier to get an exact measurement but it was still not good. The concern was that her head is not growing, which means her brain isn’t growing.

Her other measurements, although showing growth, experienced 20-25% decrease from her normal pattern. The concern being that she may not be getting what she needs nutritionally.

This time our pediatrician was very attentive to what I had to say. I got him caught up on everything that had been going on and he got going.

I left with three referrals.

First, was for the dysphagia clinic at Primary Children’s Hospital in Salt Lake City. Lydia will be able to meet with a medical doctor {I can’t remember what their formal title is!} that will look at the structure of her mouth, throat, basically everything to do with eating. Lydia will also meet with a speech pathologist and a nutritionist. This appointment will be at the end of October.

The second referral was for the neurology department at Primary Children’s Hospital. To be honest, I have no idea what to expect from this appointment. I don’t know if it will be a sit down and talk kind of thing, or run tests kind of thing. But this will not happen until the week of Thanksgiving.

The last referral was for the same behavior pediatrician that diagnosed Jacob with his autism. We really like this doctor. I was so impressed with her and we had actually already talked with her about Lydia. She is joining the team because, basically, I think Lydia’s case is becoming too much for our pediatrician. This doesn’t bother me at all, in fact, I am grateful to be in someone else’s hands that can hopefully put everything together to help us, help LYDIA the best that we can. We have yet to be able to make this appointment. We are on the wait list to simply make the appointment. Hoops, people, so many hoops.

As overwhelming as all of this was, I left the appointment with a prayer of gratitude in my heart knowing that at least we were moving forward.

Assessment Results

At the end of September, we were finally able to get everyone together from the child development center to review the results from Lydia’s assessments. She qualified for assistance! This didn’t come as any surprise to any of us, but it is just one of those hoops. We agreed that we wanted to receive services.

Lydia will now receive physical therapy twice a month, as well as help from a speech pathologist twice a month. This meeting was a lot about goals. It has been humbling to be told that my goals for her may or may not be too ambitious. There is a lot of unknowns still and hopefully we will have a greater knowledge of her capabilities in the near future.

Current State

It is a huge relief to finally be receiving some services for Lydia. We really like our team from the child development center and are so grateful that they can come into our home {services would be much more difficult to balance outside of the house with all of the kids in tow}.

We are grateful to finally have most of our appointments made now and are just anxiously awaiting them. We feel like we are in the best hands we could be in with Primary Children’s Hospital.

Some moments, I have to admit, I get really sad with Lydia. When I try and talk with her or love on her and it’s like she isn’t even there. But I am grateful those are only moments. For the most part, I have felt a lot of peace. Lydia is so very loved. And nothing we hear in the next couple of months will change that.