How she’s doing and what we’re doing with her, by category! If I leave you with more questions than answers, please, ask away!
A lot of Verity’s day could be summed up with the word “intervention.”
We help her best when we don’t allow her to do what comes naturally to her, and when we help her form good habit patterns before bad ones develop. The overarching principle is the same one we apply to our other children’s training in areas where they need it. She just needs it more, and needs more of it! It’s training on steroids!
We try to keep her engaged and focused on something, to keep her from “spacing out,” or going into a “sedated state.” It has become second nature to me to do this. If you met us in real life, you would see us making her work at something all the time she is not sleeping, even if it is just tummy time or holding her in such a way as to make her hold up her head. And during her daytime naps, if she is in her crib, I play classical music, usually Bach or Mozart, keep it bright in the room, and put toys around her and lay her on her tummy so that she has to lift her head to see them.
We are so thankful that Verity has not had so much as a sniffle since her surgery, despite the cold and tummy bug that passed through the family since then.
Many people would think that they had a choice between a baby with Down syndrome, and a healthy baby. What they may not know is that a baby with Down syndrome can be radiantly healthy! I’ve heard more than one friend say that their child with Down syndrome has never been sick, or that their typical children are sick more often than their child with Down syndrome.
I nurse her right after she wakes up, using the supplemental nursing system and nursing shield, then again right before she sleeps again, four times a day for a total of eight feedings. I do this because she isn’t strong enough yet to get what she needs to gain weight using the routine she had with her bottles. Then she got about six ounces all in one shot, but now she gets four, then two, four, then two. And so on.
After a few fast days, she slowed back down to taking between forty-five minutes to an hour to get four ounces.
No, we don’t know why, but we do know she will get stronger and faster, just like she did with the bottles after losing the NG tube! Have patience, my soul!
Most of the time I am just determined to get every last drop of fun out of this that I can! Sometimes I am tempted to chafe in my spirit, like when I missed the entire Thanksgiving dinner because of how long this process takes! Sometimes I put off going up to feed her, like I did in order to stay down and sing with everyone for an extra hour and a half, even though I know I will pay for it later. At those times I have to encourage my heart in the Lord, and thank Him that I have a little nursing baby to cuddle, and such capable family and friends to take over and help with the things I can’t do right now! I am confident that He will not allow this time to harm our family spiritually, since He has planned it perfectly to suit our need!
Back to her eating…
We have probiotics and NuTriVene-D, a Targeted Nutritional Intervention especially for people with Down syndrome. They are in powder form, waiting for us to hide them in a paste made of dried fruit, so that we can rub it on the inside of her cheek. Isn’t that weird? We also still give her Sambucus and cod liver oil daily, and are just starting organic extra virgin coconut oil. We’re planning to add gingko biloba and vitamin D3 to this mix before too long.
I am considering going to a gluten-free and dairy-free diet, partly for her sake and partly for my own.
Here she is, just awake and ready to eat. If I didn’t wake her to eat on a regular basis, she would sleep too long and not eat enough. That isn’t good for her, so I intervene to make sure she gets what she needs!
I bind Verity’s legs together during her naptime. She has been letting them flop outward. It’s not good for her, so I intervened as the physical therapist recommended. The first cardinal rule we all learned was not to allow her legs to splay apart widely. Eating, playing, being held, sleeping–we do our best to keep those legs closer together!
I will tell more about her therapy in a separate post.
I get her attention, then sign, “Eat,” to her a few times, and take her hand and have her sign it to me a few times, while saying it clearly to her each time.
She needs to have the nerves and muscles in her face stimulated right before she eats. Her occupational therapist, Marcia, taught me how to “Knock on the door!” before feeding her. Squeeze, massage, squish those chubby cheeks! Marcia calls them “cheek pads.”
“Knock on the door!”
She knows what’s coming!
I sweep the inside of her cheeks from the top down, first on the left…
Then on the right…
Then on the left again, because she is a little weaker on the left and needs extra help there…
I use a textured cloth to give her short strokes down the invisible line from the outer corner of her nose to her chin. First on the left…
See how her mouth starts to work? Knocking on that door! On the right…
And again on the left. She is so ready to work at this now! The last thing I do before she latches on~
This process takes only a minute or so, and has become a habit I don’t have to think about.
I’m teaching her the sign for “More,” after she burps midway through her meal. I tell her to “Burp, Verity, burp!” and have done that from her birth like I did with all our other children, so that she tightens up and gives it a good effort when I put her into position and say that. Then of course she must be told, “Say, ‘excuse me, please!’” when she dutifully complies. I teach her the sign for “All done,” when she’s finished eating. She loves this interaction, and beams her way through it.
She has been vocalizing since the day after she was assessed for Early Intervention, when I told the lady, “No, she doesn’t vocalize yet, other than crying.” This sort of coincidence has happened so often that we are half-convinced she understands us!
At this point, she makes consonant sounds both at the front of her mouth (“daa” and “baa”), and more commonly at the back of her tongue (“coo” and “goo”). She loves to sing along with us by saying “aaaah,” especially if she is sleepy. She loves to look into my face while I sing.
We try to make an effort to get her attention and speak clearly to her with good grammar when we are interacting with her.
Because babies with Down syndrome need extra help to focus on the auditory input they get, it isn’t best for their language development to hear lots of distracting background noise all the time. Ahem. I try to capitalize on the quiet times I have with her while I am feeding her. And I’m more aware now of the need to encourage the rest of the family to take turns and talk one at a time!
We are still seeing signs of nystagmus, especially when she is sleepy. We are expecting to hear that she needs glasses when we take her back to the pediatric ophthalmologist at the beginning of January. For now, I do tracking exercises with her, figuring it won’t hurt, and may help a little, although the doctor said it wouldn’t make a difference.
We were encouraged by a more experienced mother to take Verity for regular tympanograms, to have her ears checked for fluid in the middle ear, and for ear infections. These conditions can be “silent” in a baby with Down syndrome, and have far-reaching consequences on their language development. She also told us that if issues arise with the eyes, to have her ears checked first, as some ear issues can affect some eye issues.
Dr. Morton gave her the tympanogram, and her left ear did not pass. So he ordered a complete hearing screen, which the Clinic offers for free one day a month, thanks to donated top-of-the-line audiology equipment and volunteers from a local audiologist’s office. We thank the Lord for that!
Her left ear still did not pass the tympanogram they did, but it did pass the rest of the testing.
The lady from audiology said that probably the reason her left ear did not pass the fluid test is that the probe wasn’t working properly with her tiny ear canal. Her opinion is that Verity is hearing fine. So Verity will go back for another complete hearing test on the next “free testing” day, in February.
She explained that even if they did find fluid, and it was affecting her hearing, that an ear, nose and throat doctor would wait two months and re-check it before intervening! I was shocked! Two months of deafness, when so much hinges on her ability to hear!
It was then that I discovered that there are two approaches to health issues in children with Down syndrome.
One is to say, “Oh well, you’ll see such-and-so health issues in these Down’s kids.” (Grrrrrr! Mama bear claws! Hahaha!)
The other approach, and obviously the one we take, is to say, “This child has Down syndrome and therefore is MORE vulnerable to these health issues, which means we need to be MORE vigilant in preventing them and MORE proactive in treating them.”
She had her Holter monitor test and apparently passed it, as we haven’t heard results yet, and they always call right away if there is bad news. She is scheduled to go in for another echocardiogram on December 22nd, to follow up the irregularities that were detected in October. We pray they will become regularities instead.
(I have the pleasure of massaging ointment into Verity after each bath. This keeps her dry skin so silky soft, and gives her sensory stimulation that she needs.)
Thought you may like to see her battle scar at nearly four months post-surgery. The stitches stuck out of her incision for a very long time, leaving openings to the outside world. We believe this contributed to the four separate infections she had in her incision, but they should now be a thing of the past.
By the way, you can see that her smile is a bit lopsided in this picture, as I mentioned earlier. Cute, but needs intervention!
Little Miss might not be the only one ready to sleep now that we’ve come to the end of this lengthy post!
We are amazed at how far she has come in these past four months! Thanks be to God!