Developmental-Behavioral Pediatric Specialist

Oh boy. This is going to be a BIG long post. This week has been overwhelming to say the least. My emotions are ALL over the place and it has been difficult. I think we are all feeling like this is a defining and refining time for our family.

On Sunday afternoon, the kids and I made the drive over to Draper to stay with my parents overnight because Lydia had a morning appointment with our “developmental-behavioral pediatric specialist”. That’s a mouth full!

When we finally got our pediatrician on board in September with Lydia needing additional care, I think it was kind of too much for him. He gave us referrals for the dysphagia and neurology clinics at Primary’s, and he also gave us a referral to this doctor.

Now, this doctor was the same doctor we had been referred to in June and gave us Jacob’s autism diagnosis. I really cannot say enough good things about this woman. She is probably the most compassionate medical provider I have ever worked with. She never makes me feel rushed, she is an incredible listener and communicator, and I am so grateful that we have her.

So when we got the referral for her, I was so grateful. With Jacob, it took us six months to get in with her, and I was concerned it was going to be another long wait. BUT we were able to get in with only a three month wait and we are so grateful for that as well.

The PURPOSE to us seeing her was basically to put everything together. We were going to all of these clinics but not a lot of answers were coming and {to be honest} we didn’t feel like we had a lot of support from a medical standpoint.

As Lydia’s appointment with her neared, we noticed we were banking A LOT on this doctor. I was worried maybe we were hoping for too much, but I am so grateful to say that she was everything I hoped she would be and more {if that’s even possible}. She is an angel and we are just overwhelmed with gratitude for her.

The Appointment

Doing questionnaires for Lydia is extremely discouraging. It is really difficult to fill out an entire page of questions and not be able to answer positive on a single item. That was my experience. As time goes on, Lydia continues to fall further and further “behind” and it is heartbreaking.

Something about Lydia is that things aren’t consistently “bad”. There are times when Lydia seems to be aware of her surroundings and responds. However, there are times when she is very “removed”. When she just seems like she is in a different place and almost like a blank slate. She is there physically but seems miles away mentally.

This appointment, Lydia was lightyears away. It was definitely Lydia at her worst {and probably lasted the longest I’ve ever seen}. And as difficult as it is to see her like that, I was really grateful that this incredible doctor was able to see her like that.

The beginning of the appointment was just reviewing her history and our concerns. Then it was just observing. This was really difficult. Luckily, masks can cover a lot of tears.

Lydia was so unresponsive. And perhaps the hardest part of this whole appointment was seeing so many red flags going off for this doctor, who is so specialized and sees difficult cases every day, become so concerned. Things got intense really quickly.

One thing that has been really difficult is getting appointments made and getting clinics to communicate with one another. Between Lydia and Jacob this year, Mark and I have spent a ridiculous amount of time with insurance and doctor’s offices and it has been exhausting.

We left neurology two weeks before this with orders to have an MRI and genetic testing done. We had yet to get anywhere with even making these appointments. Just getting “codes” to get pre-authorized has been a nightmare.

When I expressed these frustrations, our doctor immediately said that she would not only take care of these problems, but take care of them today. I was shocked and just so grateful.

I left with a “to-do” list a mile long. Aggressive seems to be the term moving forward. And we are grateful to be moving forward but it’s also a little scary too. Actually, a lot scary.

MRI

A MRI is at the top of the list. Lydia will need to be sedated for this to happen. Because she has to be sedated, a special team has to “okay” this before we can even get it pre-authorized. This has been what we’ve been waiting for. 20 minutes – yes, I said 20 minutes – after I left her office, we had the green light. I don’t know what magic she works, but it is amazing.

Now, we are just waiting for pre-approval from our insurance and then this will be happening.

Genetic Testing

The other top priority item is genetic testing. This has been another headache in getting “codes” for pre-authorization. However, our incredible doctor went ahead and swabbed her in officer during her appointment to get the process going. So grateful.

She is currently doing a microarray test which is basically the first tier of genetic testing. If nothing comes from that, or perhaps even if something does, more in-depth genetic testing will be done. But this is step one.

She told us genetics usually take a year to get an appointment with but she assured me that that will not be the case for Lydia.

Iron

Lydia is considered at a high risk for an iron deficiency. So she is getting a full panel of tests done while she is sedated for her MRI.

Neurology

Our doctor wants to meet with our neurologist to discuss steps moving forward. She definitely did not feel like enough was done at our neurology appointment. She took several videos of Lydia during her appointment and was going to review them with our neurology team.

She is also concerned that Lydia might be having seizures. That was a hard one to hear. There are already so many struggles it was difficult to hear of that one possibly adding to our list. Obviously, they are not manifesting in convulsions but are more subtle. She was concerned she was perhaps even having one during our appointment. So there is a possibility that an EEG will also be in Lydia’s future.

There are also a lot of concerns about Lydia’s muscles. She is concerned that the messages from her muscles to her brain and vice versa are not working properly. This is also really concerning and we are unsure what the future looks like for that.

Constipation

This almost seems like a silly thing to include after the above information, but constipation is frequently {almost daily} a problem for Lydia. She frequently throws up because she is pushing so hard. We give her so many prune purees and have put her on a lactose-free diet and it seems to not improve at all.

So we are now going to try and give her some MiraLAX every day with the hopes that it helps moves things along.

Eyes

There was also concern over Lydia’s eyes. Something neurology brought up, as well as this doctor, is that one eye is a little sunken in. We have noticed this as well.

They wanted us to get in with an eye doctor to get a full exam before the MRI. That way, if she needed extra attention, they could do it while she was sedated for the MRI.

Hips

Since Lydia is not bearing any weight on her hips, they are worried about her hips being where they should. Our physical therapist had warned us about this about two months ago, so this didn’t come as a huge surprise.

But immediately after this appointment we were sent down to imaging to get an x-ray done of her hips.

Hearing

Lydia did not respond to any sound during our appointment {loud bells were used}. Lydia passed her hearing screening as a newborn and the child development center also screened her back in June.

There is a concern that her ears might be fine, but we are unsure if the messages are transmitting from her ears to her brain and being processed accurately.

So we have an appointment to get a more thorough hearing screening done as well.

Sensory Therapy

The final note on my to-do list was sensory therapy. Lydia scratches herself constantly. We have to have her fully covered at all times now. She scratches so hard that she bleeds and then she keeps going unless we stop her. She constantly scratches at her thumb with her finger and it has become so callused but we can’t put Band-Aids on her or she eats them. It’s difficult.

The working theory is that she is just trying to get some sort of sensory action – in other words, she’s just trying to feel something. So we are going to try and come up with some ways with our physical therapist on how we can help stimulate those sensory needs in other ways – other than self harm.

Hip X-Ray

We left her appointment and went straight to imaging to get Lydia’s x-ray. She did fantastic {except for she peed on everything – sorry ladies!}.

Good news was that later than day {on my drive home} we heard that her x-ray came back “normal” so for at least right now, that is one thing we don’t have to worry about!

As I drove home, I got four more phone calls from various clinics about different things so it is good that things are moving forward, but, very overwhelming.

Also, let me just add here that the kids are incredible about traveling. It is a three hour drive each way, and my kids do fantastic. They never complain and it is such a blessing. They have been so patient throughout all of this and I am so grateful for them.

Eye Exam

Just to give a snippet into what scheduling is like, I was given a call Monday afternoon {after our appointment} from our doctor’s nurse telling me that everything was set up for us to see a pediatric ophthalmologist prior to Lydia’s MRI and I just needed to call and set up the appointment.

After being transferred five times between different clinics and locations, I finally talked to someone about scheduling an appointment. I explained the situation – that this needed to happen prior to an MRI and so time was an important factor. She told me she had no notes about that and the soonest she could see Lydia was January 29.

I scheduled the appointment but immediately called the nurse at our doctor’s office telling her this was what they told me. She told me that it was unacceptable and asked if she could go ahead and schedule it for me. I told her that was fine with me!

She then called me back about fifteen minutes later with an appointment in two days.

It’s so frustrating that that is how it works. It really bothers me. But at the same time, I am just trying to be grateful that we finally have some medical backing to move things along quicker. But my heart hurts for all of those that don’t have that – we’ve been there!

So two days later, Lydia and I drove down to Salt Lake again to see the ophthalmologist. Luckily, Mark was able to switch with someone at work so I didn’t have to take all of the kids with me.

Lydia was not a fan of her eyes being dilated, and other than having some light sensitivities {we’ve noticed this before and this was observed before her eyes were dilated}, her eyes are all good to go!

We were kind of surprised because neither Mark or I have good eyes but we are happy to know this isn’t an issue for Lydia right now. AND that means that scheduling an MRI hopefully will be easier since we don’t have to coordinate between two departments.

Summary

This week Lydia also had her eighteen month wellness check up with our pediatrician in town. I think he is overwhelmed with everything and he really didn’t say much of anything.

Lydia also met with our case director and speech pathologist online for therapy this week, which was probably her worst one yet. The poor girl is so done.

It has been a long week. There has been a lot of tears. There is a lot of uncertainty. There is a lot of fear as things have gotten brought up far worse than we ever suspected {and I felt like we had prepared ourselves for a lot}. Things are hard. But we are trying to keep things as “normal” as we can and also accept that our “normal” moving forward might look a lot different than what we are used to.

Despite all of this uncertainty, we really feel a lot of gratitude. I think we finally have a good medical “team” to back us up and move things forward. We are praying for faith – so much faith. We are praying for peace – bucket loads of that. And we are leaning on one another. We are leaning on our Father in Heaven who I know loves this little girl just as much as we do. And we are leaning on our Savior who knows exactly the feelings of our heart, because He, sadly, has felt them too.