Busy, busy, busy. That is the best word to describe our lives lately! We are going through a lot of changes and transitions as a result of Hannah’s recent appointment with the Thomas Center. For those who don’t know, the Thomas Center is Cincinnati Children’s center for children who have Down syndrome. They have a team of doctors and therapists who specialize in Down syndrome. I’ve heard a lot of different opinions about the Thomas Center, some good, some bad, but our experience has always been amazing. They have truly been a blessing in our lives and have given a huge amount of guidance.
Right now, we see the Thomas Center about once every 6 months. When we go, we see the entire team. That means we see a physician, physical therapist, speech therapist, occupational therapist, and a dietician. It usually lasts about 2 hours or so, and there is a ton of information to take in. It’s been a little while since I’ve done an update on where Hannah is at medically and in her development, so I figured this appointment is a good way to get everyone up to date!
Hannah has been doing great medically (Woohoo!). She went the entire winter without a single hospitalization (huge milestone!). We had routine labs drawn a couple of months ago, and her TSH was slightly elevated, so she will be getting repeat labs done in the near future; whenever I have the heart and time to go get it done, really. Since I knew they wanted a repeat TSH, I added in several other labs that are recommended for children with Down syndrome, including some more that pertain to her thyroid levels. TSH alone isn’t a good indication of how the thyroid is working, so getting free T3, free T4, reverse T3, TPOab, and ATGab checked are essential in getting a full picture of the thyroid. Yes, some providers may look at you like you have a third eye when you ask for reverse T3 (been there, done that), but research shows it is essential in truly understanding how the thyroid is functioning. Thankfully, our physician at the TC put in orders for all of the labs I requested without even a second thought (which is why she’s awesome).
Other than monitoring her thyroid, nothing new is really going on with Hannah as far as medical things go, and we are so thankful for that!
We always feel slightly bad for the dietician because they just kind of hang out in the corner the whole time. Hannah is such a good eater, and really has no issues when it comes to trying new foods and eating enough good foods. Her diet is a typical toddler diet, so there’s not much for the dietician to do at the appointment. We did talk with her briefly about maybe eliminating dairy from her diet for a short time to see if the redness on her face, and her random rashes would stop appearing. We are still undecided about the cause of her facial redness and the rashes, so we’re still working through the best route as far as those things go.
One of our biggest concerns going into this appointment was making sure there is nothing physically holding Hannah back from walking and standing independently. Due to her lack of progress this year, we took a break from her weekly, private physical therapy. It was a tough decision made between us and her physical therapist, but one that we all think was necessary. Hannah still receives biweekly physical therapy from Early Intervention, and we still get her in her gait trainer as often as possible. Her resistance to standing and walking independently though, was becoming a bit concerning.
After the TC physical therapist evaluated her though, she said she doesn’t see any physical reason Hannah is not walking. That was great news! Everyone is super impressed with how her clubbed foot looks, and no one has any concerns of hip dysplasia. We all came to the conclusion that she is just stubborn and still lacks the confidence to stand and walk independently. The PT recommended we start weekly treadmill training with her for the time being to try to help Hannah get the motion of walking down without having to think too much about it (She just had her first session today and did amazingly!). While it is hard to see Hannah frustrated at not being able to run and play with her brother and other kids her age, I know that she will get there in her own time. So, right now we are going to give her the encouragement and support she needs, and try to help her build her confidence. Lastly, we got the green light to ditch the Surestep AFO orthotics for good! She may need to get SMO’s in the future, but for now, she is orthotic free!
Our time with Hannah’s occupational therapist was fairly uneventful. She was pleased to hear Hannah is using a fork at meal time, and was happy she is drinking out of a straw sippy cup. The only concern we raised was that Hannah coughs when she drinks out of her straw cup, sippy cup, and bottle. She was doing this the last time we saw the TC and we chalked it up to her still learning how to drink from different cups. The fact that she was still doing it though, raised some concern from the OT, so she agreed that Hannah needed a swallow study.
We were so blessed to get right in the next day due to a cancellation, so Hannah had her swallow study on April 10th. It took only a few sips for the speech pathologist to confirm that Hannah was aspirating while drinking liquids. That means some of the liquid was going into her lungs when she swallowed. They tried to evaluate her with solid foods as well, but Hannah was having none of it, so we only got to see how she was doing with liquids. Because she aspirates, Hannah was officially diagnosed with Dysphasia. This means we have to thicken all of her liquids for an indefinite amount of time. She was also referred for feeding therapy, which she starts on May 14th. Once she has had a few months of feeding therapy, we will do a repeat swallow study to see if the aspiration has improved at all.
We spent quite a bit of time with the speech therapist at this visit. At our last visit, there was some concern about Hannah’s lack of speech and babbling. We took the wait and see approach since she was only 1 1/2 at the time. I knew going into this appointment, speech was going to be the main focus. The therapist did her evaluation and asked us how she was doing at home with speaking and babbling. After quite a bit of time spent observing Hannah, the speech therapist suggested Hannah may have speech apraxia. Now, if you know anything about speech apraxia, you may be thinking Hannah is way too young to be diagnosed with it, and you would be correct, she is too young to be officially diagnosed with speech apraxia. Her speech therapist was the first one to tell us that children generally aren’t diagnosed until they are 4 years old. However, because Hannah’s receptive language (the language she understands) is so far above her expressive language (her communication), the speech therapist thinks it is very possible Hannah has speech apraxia.
Childhood apraxia of speech is where the brain has difficulty coordinating the oral movements needed to create sounds and words. Almost all of us take it for granted, but speech is a very hard, complex thing we do every day. There are so many different parts that work together to create just a sound, even more to create a word, and even more to create a sentence or phrase. Hannah is picking up ASL very quickly. She does well over 20 signs, and knows what way more than that mean, but she still doesn’t speak. Her babbling is very few and far between, and she still mostly just creates vowel sounds (they’re the easiest). She has passed both of her hearing tests with flying colors, though she does have another one coming up just to be sure, so there is little concern about her hearing being the cause of her lack of speech.
My first question when the SLP presented this potential diagnosis to us, was will Hannah ever talk. She said there is no way to know right now. She said some children with speech apraxia never speak, and some speak just fine later on in life. We have heard so many success stories over the past few weeks, and they have been so encouraging to us. We obviously hope that Hannah will speak one day, but in the mean time, we have been trying to become fluent in ASL. Whether Hannah ever speaks or not, we need to be able to communicate with her, so we will do our part and learn her one and only language for now.
We are currently on the waiting list for speech therapy at the TC, so we will be starting that within the next 6 months. Our new speech therapist will also be working with Hannah with an AAC device (Augmentative and alternative communication device). This will basically be a tablet Hannah will be able to use to make choices. This will not only give her the ability to communicate more easily with everyone, but studies have also shown that the immediate, auditory feedback that is given when a choice is made helps children with speech apraxia learn to speak as well. While this was not our ideal outcome, I’m thankful for a team who is honest, but also uplifting and encouraging. I know they are doing everything they can to help Hannah reach her full potential.
In my research on speech apraxia, I also found out about the great success of PROMPT therapy. I asked several people who have children with Down syndrome and speech apraxia, and they truly believe PROMPT therapy is the only reason their children speak. Because of all of the success stories I heard, we set up an evaluation set up for May 17th to possibly get Hannah started with PROMPT therapy. The only downside with this therapy, is that it is very, very expensive. The local office who does it and has extensive experience with children with Down syndrome, is not recognized by BCMH or private insurance because the office is deemed, “too small.” That means we will be paying for the therapy out of pocket, and that equals several hundred dollars each month just for speech therapy. While there are several grants that help children get the therapy services they need, Hannah unfortunately doesn’t qualify for any of them, either because she’s not old enough, or because her diagnoses do not fit their criteria (a lot of them are for children who have been diagnosed with autism). All of that being said, if anyone would like to donate to help Hannah receive this therapy, it would be greatly, greatly appreciated. We have always done what we can to provide Hannah with the services and therapies she needs to overcome her obstacles, but in all honesty, it comes at a price. So if you are able, and feel led to donate, please message me!
Overall, it was the roughest visit to the TC we’ve had. We added at least 3 new therapies, a new supplement with the liquid thickener, and a new diagnosis. But we are still feeling confident and equipped to handle everything that comes our way. Hannah is such a blessing, and every day Christ gives me strength to be the best mom to her that I can be. It’s only through Him that we’ve gotten this far and are able to still be joyful. Every good and perfect gift is from above, and Hannah is by far one of the best gifts we’ve been given.