The Quail is now 6 months old. She is 26 inches long and 14.9 lbs. Her head is 16 1/2 inches in circumference. She is our little butterball and we are so proud. The main thing that will determine if she needs open heart surgery to correct her moderately sized, membranous VSD is her growth. Children that have Down syndrome typically grow slower and smaller then children that don’t. There is a separate growth chart that they are measured against because of this. In The Quail’s case we have been blessed- she has maintained her weight growth at 43% on the standard charts. At her 6 month well-check appointment last week her height shot up to 75% on the standard charts! If she can continue this for the next 6 months most likely she will not need surgery in the next year. We are certainly hopeful, and more importantly our cardiologist is cautiously optimistic that this will be the case. So much so that he was willing to schedule her next visit 3 months out. The Quail is currently involved in therapy. Our main issue to work on with her all along has been feeding issues. While she came home from the hospital in the standard amount of time, it was taking approximately an hour and a half every 2-3 hours to get 1 oz of food in her, via a syringe or SNS system. She wasn’t able to suck milk out of a bottle without most of it running down her little chin. Over the first few weeks she gained enough strength to eat from a Soothie bottle (just at the point when I thought I might pass out myself from trying to get her to eat any faster!) but not the Dr. Brown’s bottles that we had used with her sister. In the last few months we have transitioned to a Dr. Brown’s bottle in hopes that it would help with her continuous barfing. It helped some, but not enough. It’s funny- I have acquaintances who are in the process of weaning their 6 month old babies. I on the other hand am still trying to see if I can get The Quail to nurse. I know most people would advise to let it go by now- but I’m convinced that her ability to nurse can only help her in later food and speech issues by working those muscles that can’t get worked another way. We had been seeing a speech therapist since about 2 months who would monitor her progress and was quite pleased in her ability to drink a bottle in about 20 minutes without her oxygen saturation dipping. When I finally asked again and for the final time for her give us exercises that would help her learn to breastfeed, I was told there weren’t any. A friend of a friend of a friend was able to give me the name of an OT that helped them to work through nursing issues with their child. So we contacted her about a month ago now and when I told her what our SLP had to say, her response was- that teaching children to breastfeed is what she gets paid to do. She also mentioned the guru Sarah Rosenfeld-Johnson and her emphasis on strengthening oral-motor muscles. Ironically the SLP never once mentioned her. So now we go 2 times a month to learn new exercises and see what we can do. Obviously starting this, this late in the game is going to be a hindrance; but as long as I have a decent milk supply I figure why not try. So now The Quail happily looks forward to all of her daily oral-motor exercises up to the point in which I attempt the real deal- at that point she chooses to exercise her lung muscles.
The Quail started smiling at 2 months old. She is a fairly serious and thoughtful little soul- but the smiles are now easy to come by and we work our little proverbial butts off trying to get a giggle out of her. To date, Lovey is the only successful one, but I have to say there is nothing I have enjoyed more then watching people hear this and proceed to step up to the challenge.
The Quail exudes calmness, understanding, attachment, wisdom and joy. She exercises her hand to mid-line control by taking our faces in her tiny palms and pulling them to her mouth so she can lick us or tell us, “Ahh-goo”. She will also hold her bottle with both hands if she is particularly hungry and her sister has been attempting to feed her in such a manner that equates with the bottle being taken out of her mouth every 5 seconds. Her absolute favorite toy or joy in the world is us. Toys hold little interest for her but she is big on watching and being with us. You set her in another room and go off to do something else and she is not likely to let you leave her there long before she’ll start hollering. Her next favorite toys right now are her bunny lovey, a nursing necklace, plastic chain links hooked together, receiving blankets to cuddle, her monkey ball, any teether or hand she can sink her gums into and a tiny piano that we use for sit-prop play.
She expertly rolls from tummy to back and is quite skilled at using this maneuver to get herself out of tummy-time. She can prop herself on her elbows and is working on propping up on her hands. She is working on staying on her side to drink her bottle, nurse and play but again is quite adept at getting back to her back. We still swaddle her to sleep at night and I am continually amazed at how a little baby with supposed low-muscle tone manages to wriggle her swaddled body down and sideways a foot or more routinely. But she does it.
The Quail goes to the same daycare as her sister and also like her sister, is a little bit in love with Ms. Kelly her teacher. When Lovey drops her off in the morning her little face lights up and she kick, kicks, kicks her little joy-filled legs- which also by the way is good exercise!
She has also had a PT evaluation in the last month because the OT pointed out that she isn’t activating her abdomen muscles and she tends to lay frog-legged. We’ll be trying hip-helpers to strengthen her little dinner roll thighs. The OT also thought that the weakened abdomen muscles was contributing her her frequent barfing. She is not being treated for reflux like her sister was at this age because her weight gain is steady and she is what they call a happy-spitter- she doesn’t arch and scream and refuse her bottle. We’ll see what the PT has to offer.
And our dear Jodie- our EI also comes one time a week- sometimes to daycare and sometimes to home to also give us activities to do with The Quail. The Quail also grins and talks to her as does her sister.
All in all it’s been the sweetest 6 months of our little lives and we are so very blessed to have become a family of 4. Thank you dear Quail- much love
Hi there, I’m glad I found your blog. I see that you already have Jax blog on your sidebar, where the heck have I been?
Hi Lacey! No worries- you’ve probably been takin care of your little honey-bun! I’ve found a lot of family blogs just looking at everyone elses links- Nice to meet you!
Oh good for you! You keep on working on nursing–she’ll get the hang of it! You are definitely on the right track to follow up with Sara Rosenfeld-Johnson’s techniques. The reason your SLP couldn’t tell you anything about her, or ways to learn to nurse is because they don’t teach oral motor to speech therapists in school. Isn’t that crazy? I’m glad you have an OT who is willing to work with you. You might also try a lactation consultant.
Abigail is adorable! I look forward to watching her (and you!) grow!
Thanks so much Beth! It’s so nice to have the encouragement- it makes all the difference! It is bizarre to me that SLP’s wouldn’t work on oral-motor issues- it makes complete sense that when there is a diagnosis of hypotonia that of course it would be just as difficult to use the oral motor muscles as it is to use any of the other muscles. I can already see a difference in that she is getting little cheek creases around where her smile is and she is smiling and laughing and babbling more frequently and easily- where before that part of her face was just smooth. I talked to an SLP student the other day and she was explaining how controversial SRJ techniques are b/c they are considered more invasive then traditional ST. It’s so strange to my way of thinking- it makes me want to go back to school and become a ST so others can get the benefit of her work! We’ve tried all the LC guru’s in our area. They had all been such blessings with my older daughter while I worked through nursing issues- they are the main reason I went to the hospital I did to birth the Quail- I was surprised they offered as little help as they did- they have been willing to help on non-oral-motor issues with me and they told me I needed an OT or SLP who focused on feeding issues but didn’t really know anymore. I need to go back to them and give them this OT’s name so the next mommie who comes through doesn’t waste 5 months trying to get the help that can make the difference!