How do I have an 18 month old? I can’t believe how quickly time has gone! Since 18 months is a BIG deal, this is going to be a BIG blog post! I’ll split it up into different categories to hopefully make it easier to get through. I’ll go ahead and put a summary up here at the top in case you don’t want to read all 1,900 words (can’t blame you!). But for all you brave souls, I’ve gone into detail about Hannah’s health and development below!
Overall, Hannah is doing amazing! She can sign, crawl, pull up to kneeling, feed herself with her fingers, we are trying to transition her away from her bottle and to a sippy cup for her milk and she is doing fairly well with that so far. She can climb over things, take steps in her gate trainer, and she can understand a ton of words and signs. She is the happiest, most friendly, sweetest little girl I’ve ever met, and I feel truly blessed that God gave her to us. I can’t believe I ever thought Down syndrome was a bad thing. She is such a beautiful light in a world that is so full of darkness. Even with seven hospitalizations (that’s an average of 1 hospital stay every 2.5 months, by the way), open heart surgery, several other medical issues, and just life in general, she has managed to stay so happy most of the time. People ask me constantly if she is always happy, I always reply with, “she usually is” because it’s the truth, she does have her moments, but also because I want everyone to understand that she is more than capable of feeling negative emotions; she just chooses not to, and that is a beautiful gift. There is an incorrect belief that people with Down syndrome are always happy because they aren’t capable of feeling the spectrum of emotions those of us with 46 chromosomes experience, but it’s simply not true. The can experience every emotion, they just choose to be happy and loving. I honestly hope that continues to rub off on me for as long as I get the privilege of being Hannah’s mom.
Not too much has changed from a cardiology standpoint since my last update. We are still waiting to see what her echo in November says about the pressure in her heart before we will know anything else about future procedures. The only change is that we just scheduled an appointment with her cardiologist for next Friday, the 17th. While Hannah was inpatient at Children’s for a night last week, she had an episode of ventricular tachycardia. Vtach is basically where an abnormal electrical impulse that originates in the lower part of the heart, the ventricles, causes the heart to beat faster. The vtach lasted for about 2-3 minutes, and during it Hannah’s heart rate and respiratory rate increased. We are well aware that monitors can malfunction, but Hannah was asleep at the time, so she wasn’t moving, and her vitals did change. We’re still not sure whether or not the vtach was real or not, but her cardiologist does want to see her sooner than November because of it. So, next Friday, Hannah will have an EKG done, we will see Dr. Madsen, and then they are going to give us a Holter Monitor to record her heart activity for 24 hours. Hopefully everything will come back normal, and we can chalk it up to a monitor malfunction, but I would rather be safe than sorry.
We completed the GI clean out (that was not fun), and have been working on tweaking her medications in order to regulate her system. She seems to be doing much better, and we seem to be close to the correct dosages. We will have a follow up with GI within the next few months, but I don’t expect anything major to change anytime soon, thankfully!
Hannah has been UTI free for a little over a month now! We had a follow up with her Urologist a few weeks ago. The best thing he could come up with since all of her testing came back normal, was that the constipation was causing her UTIs. We are supposed to follow up in 6 months, assuming she doesn’t get anymore UTIs. Whatever the cause, we’re thankful for a month, and hopefully more, of being UTI free!
Hannah was fitted for a new pair of boots for her clubbed foot a few weeks ago. To be entirely honest, she doesn’t wear her boots and bar much though. She has so much trouble sleeping in the first place, and the boots make sleep almost impossible for her, and Hannah (and mommy) needs sleep. Both her physical therapists have said her foot looks great, it is slightly less flexible than her right foot, but nothing extreme. Her last visit to ortho was in February, and they were pleased with how her foot looked as well. We have tried to get creative with wearing her boots during the day, but I honestly forget a lot of the time #honestmommoment. She has her next ortho visit at the end of August, so we will see what she says then. Obviously, if I was told she was going to have severe consequences from not wearing the boots, we would suck it up and try to figure it out, but that hasn’t been the case so far, and hopefully won’t be the case ever!
Hannah also sees ENT next week. She is currently not on oxygen or medication for her obstructive sleep apnea, and we are hoping to keep it that way. She has another sleep study in November, so hopefully we will have good results from that one as well. Her ears have always looked great, no ear infections or concerns, so we mainly just see ENT for her sleep apnea. This appointment will just be to touch base.
Hannah has her reevaluations with the Thomas Center (the Down syndrome clinic at Children’s) this month. We meet with her doctor, PT, OT, and speech and just touch base and see how she’s doing. The Thomas Center keeps track of all of the necessary labs that need done since she has Down syndrome, and they also check in on her development. We have never actually had to go and get labs done because we’ve always had hospitalizations, but in the future, it will be nice to have a team that knows exactly what she needs and when. We are very blessed to live just down the road from one of the best Down’s clinics in the country. We have been super happy with her doctor and therapists so far, and we’re looking forward to them seeing all the progress Hannah has made!
Hannah has PT twice a month at our home through Early Intervention, and we also recently added PT from a private therapy company once a week. Over the past 18 months, I’ve seen PT help tremendously, and I’ve also seen it do absolutely nothing until Hannah was ready to do whatever it was we were working on. Because of this, I’m not one to push therapy. If Hannah ever seemed to be harmed more than helped by any of her therapies, we would lighten the load. Thankfully, that hasn’t been the case since we began private therapy. Hannah has been doing awesome! She can now climb stairs by herself! She can also climb over things, pull herself to her knees, play while standing against the couch, and she can take a few steps in her gait trainer without any assistance! We are currently working on pulling up to standing without any assistance, and she is so close. She could do it, but she doesn’t have the confidence to do it complete by herself just yet. We’ve also started working on cruising. Her last PT session, she took a step to the side entirely by herself; we were super proud of her! Overall, yes, she is delayed, but she is doing so well. She tries so hard, and is so determined to get things (if she wants to).
Soon, we will be getting her fitted for orthotics called SureSteps. We’re not entirely sure which kind she’s going to get yet, but they basically just provide support at her ankles, and if we get ones that go up her leg, they will support her knees as well. We’re hopeful that with a little more support, she will have the confidence she needs to start standing by herself, and be one step closer to walking.
Hannah receives ST through Early Intervention twice a month. We love Ms. Sharon, and have been so happy with Hannah’s progress! Our speech therapist came from a local school for the deaf, so she is fluent in sign language, which has been so great. Hannah can sign five signs, and understand several more than that. She hasn’t said any words yet (not consistently at least), but she is doing pretty well at communicating using sign language. Her favorite signs are “all done,” “sing,” and “want.” She says she’s “all done” with anything she doesn’t want to do… sometimes before we’ve even started (haha). She is constantly asking anyone and everyone to sing to her, and she is a typical child and thinks she wants absolutely everything! Her ST is really working with her to get her to mimic some basic sounds. We are also working on helping her make decisions by choosing from pictures that we lay out for her. We are going to stick with just twice a month for now. She seems to be doing well with it, enjoys it, and after all, we can’t force her to speak, so I’m not sure more therapy is what she needs. She will talk when she wants to, and we’re fine with that!
Hannah has graduated from feeding therapy! She is doing so well with eating and trying new foods. She loves to eat and will try literally anything (she usually likes it too). Her OT and I decided at her last visit that she won’t really benefit from feeding therapy anymore, so we have started working on her fine motor skills once a month with her Early Intervention therapist. We are working on her pincer grasp, instead of grabbing things with her whole hand. She has been doing really well, and seems to be progressing quickly. We are also working on strengthening her shoulder muscles by encouraging play that makes her reach above her head. We’ve made several therapy tools with things laying around. We use an old Gerber Puff container with a stacker on top to put straws in, we use an old tissue box to put blocks (and anything else that will even remotely fit) inside, and we use painters tape on our glass door to encourage her to reach up and peel it off. Homemade toys are the best toys, and Hannah doesn’t even know she’s working! We are contemplating starting OT at the private therapy practice as well. We want to work slowly though, and don’t want to overwhelm her, so we will probably wait a few more weeks.
We started Hannah in swimming lessons a few months ago. We ended up taking a break when we went on vacation, and that 2 week break turned into a summer long break. She loves the water though, and swimming lessons/therapy are so helpful for muscle tone, so we will be starting those again soon!