Oh my goodness, it’s hard to believe I haven’t done an update on Hannah in 5 months! We have been very, very busy, and she has done so much growing and developing.
Hannah has been crawling for the past several weeks! She had been trying to so long, and now that she’s got it down, she’s impossible to stop. She goes all over the house, follows everyone, and (of course) gets into a lot of mischief. She’s never content for long, though. She has been showing a lot more interest in standing and pulling herself up lately. She can pill herself up to her knees pretty easily, and can stand against her activity table without any help. Her PT thinks she will be walking soon(ish), but would prefer she crawl for a bit to gain balance and strength. So, from a gross motor stand point, right now we are just encouraging her to crawl, to crawl over things, and to stand when she wants to. She is doing amazingly at her gross motor skills! She has surpassed everyone’s expectations.
Going along with her PT, Hannah also started swim lessons last month. She hated them at first, but the last two have gone very well and we’ve been making some progress. Right now, they are all about getting her used to the water, splashing, being on her back, and finding the wall. They will also help with her overall strength and balance. They are just 15 minutes long as children her age tend to only have an attention span of about 8 minutes in the water. I’m hoping they continue to go well. If bath time is any indication, we are going to have a little water baby on our hands!
Hannah also started feeding therapy from OT. She doesn’t see them often, but we get regular visits about once a month to check in and see how she’s doing. She has very poor chewing skills, so her food selection is a little bit limited. She can have very, very small bites of just about anything, but she can’t have anything that she would have to chew or else she would choke. She likes most things, she just doesn’t like very much of them. I can usually only get her to eat a few bites of any one thing, so we have to be creative and try to give her a variety of textures and types of foods.
She is going to be starting speech therapy soon. From what I’ve been told, a lot of speech therapists like to wait until a baby’s gross motor skills have developed well before starting speech therapy. When we visited the Thomas Center (DS clinic) at Cincinnati Children’s, the speech therapist told me we should see a drastic pick up in Hannah’s speech once she started crawling, and sure enough, we did. Now that she is in a very good place from a gross motor standpoint, we will be starting speech therapy through Early Intervention soon. Hannah has been babbling a lot, and has even copied a couple signs. We decided early on that we were going to teach her at least the basic signs. She enjoys watching us do them, but has never showed much interest in copying. She copied “sing” a couple weeks ago, but not much since then. Her speech therapist is fluent in ASL, so I think she will be a really great fit for us.
Hannah saw cardiology just before her birthday in February. She had an echo while she was inpatient just a week prior, so they did not do a repeat one. It showed that she still has pulmonary hypertension and that the pressures in her heart had increased a bit. Because the pressure in both the atrium and ventricle had both increased, her cardiologist was not overly concerned though. He did want a repeat echo in 4 months to see if they had increased again or not, so we will be going the beginning of June for that. If that echo looks good, we should be able to space out our cardiology visits even longer than 4 months apart. He did take Hannah off of her lasix, so she is officially just on aspirin now for her heart. Our hope is to stop the aspirin in June after her next appointment.
As far as Hannah’s overall health goes, we have been very blessed to have a fairly healthy 5 months. She was in the hospital for a week in January with bronchiolitis, but that has since cleared up. She was diagnosed with a UTI last week, and has been on antibiotics. Her primary care has said he will allow one UTI without much concern, as long as it clears up, but if she gets another one, she will have to have a gambit of tests run on her urinary system to make sure everything is fine structurally. Babies generally don’t get UTI’s, so they have a pretty low tolerance for the amount they are allowed to get before they start looking for a cause. She seems to get responding to the antibiotics, and we will have a repeat urinalysis at the end of the week. So, hopefully it will clear up and not come back.
Hannah had a sleep study at the end of March. It went extremely well, and they were able to get all of the data they needed. They also didn’t have to turn on her nighttime oxygen at all! She has been on nighttime oxygen since January, but she sats well at home when she is sleeping, and she didn’t need it during her sleep study, so we are hopeful she can come off soon. We won’t know the full results of the sleep study until our appointment with ENT on May 8th, so I will have more information then.
We will also be seeing GI within the next few months to see if we can get her bowels more consistent. Hannah has always had constipation, as most babies it’s DS do, but she also has diarrhea often, with no apparent reason. We will be getting an abdominal X-ray to make sure she isn’t just super backed up, and will be discussing her Miralax dose. She has been on Miralax almost her whole life, and hasn’t responded well to other treatments, so I’m interested to see what GI has to say.
I think that about covers everything that has been going on the last 5 months. We have had a ton of appointments, a couple trips to the ER, a hospital stay, and a myriad of tests, but at least we can say there is never a dull moment! Hannah keeps us on our toes and always gives us a reason to smile! I can’t believe how much she has grown and changed over the past 5 months. I blinked and my baby grew into a toddler. It’s bittersweet, but I could not be more proud of the way she is developing! She was born defying the odds, and she hasn’t ever stopped!