Quailday: another kind of happily ever after…

Do you know Dave Hingsberger?

He’s a strong advocate and friend to a lot of us that find our lives touched by the world of disability. He’s compassionate, thoughtful and quickly analytical. He gets the struggles that sometimes seem inherent in the lives of those that are marginalized by their communities. I had the good fortune of hearing him speak many moons ago as a young social work intern learning my way in the field of disability advocacy. His words touched my heart and stayed with me even though I only saw him a few times and so very long ago.

Shortly after the Quail was born and I found myself repeatedly googling disability issues and reacquainting myself with our modern-day heroes and advocates. I found out that Dave makes himself a willing and daily member and advocate of our community via his blog. What good fortune! What wisdom. I feel so blessed to live in a world where technology has enabled me to have access to wisdom and support at all hours of the day.  Particularly on sleepless nights when my mind is in a race with my heart to beat out worry.

A couple of months ago Dave took fingers to the keyboard to convey the unconventional wisdom found in an ordinary everyday situation- a mom and her teenage son dickering about his right to be independent on a daily basis. His right to the dignity of risk. Years ago, as a young whippersnapper of a social worker living in a liberal community,  I would have read this story, and been rallying around that young teenager. Of course he should get to go get his food in the mall without an escort. It’s the mall, he’s a teenager, teenagers hang at the mall all of the time without befalling dire consequences. Right? Having a disability shouldn’t mean you have to be escorted everywhere.

But sadly, in our world, in this day, those everyday situations can befall horrible outcomes. Not everyone respects people’s dignity of risk or frankly- human life. Some people spend their time making others who have worked so hard to be a part of the community, to be accepted, to at least be allowed to live in peace, live a nightmare- at best. As a mother I hear about these stories and I want to take both of my children in my arms and never let anyone talk to them without first going through a battery of testing of my own. The fear eats at me. The worry of what I can do to prevent any harm befalling anyone tugs at my soul. Why anyone would insist that their right to call someone a ret@rd is more of a priority than the person on the receiving end’s dignity is beyond me. Just because we have the right to say what we want doesn’t mean we have to. I will never understand people defending their right to be mean. It’s one thing for someone to make a mistake, realize it, apologize and learn from it. We’re all human. It’s a diagnosable personality disorder to defend the right to hurt others.

The critics and trolls insist that as parents and advocates asking you to please remove this slang from your vocabulary is petty, politically correct and  an overstatement of the issue at hand. I would say the extinction of Ernie Hernandez Jr’s life is a sad statement to the seriousness of the issue.

Our world is changing though. It’s this fact that restores my faith. The world understands now that people who clinically have the diagnosis of mental retardation can learn. They may learn differently, but they do learn. The term retardation when used appropriately isn’t the issue. The issue is that a wide sect of people use it to degrade others and then defend their right to be ignorant about it. The issue is so significant that even the medical community has decided to step in and revise their language. The correct term in the DSM-V will be intellectual disability.

We can all learn, if we are willing. As a friend, a community member, as a co-worker, as a family member, as a fellow human being I am telling you it gives me pause when you say ret@rd in reference to something you did that you think was stupid. I know you may not have thought about it before. I know you may not have had any reason to question it. Everyone says it right?

Well give me a few minutes of your time and open your hearts and mind and take the opportunity to learn about the history of people diagnosed with mental retardation. Read this. Know the struggles that have been faced and won, and those that still exist. If you still disagree about the significance of the R word, that’s fine. Just as a friend- please don’t use it around me or my family. That’s at least a start.

And as to that teenager and his mother; well, let me commend her and her brave heart. She listened to her son. As a social worker and disability advocate I had no doubts about his rights. As a momma to a sweet Quail making her world in her community, I stand guard to the harm that may befall her one day. And hopefully, one day, I’ll be as brave as that Momma to know when it’s time to let her fly. With the wisdom of folks like Dave, I’m sure I’ll stay the course.

Our language frames how we think about others. Help eliminate the R-word from everyday speech. Won’t you please join me in taking the pledge to end the R word?

A peach of a mama…

Have you met Ds Mama? Well she’s expecting- 2, not twins- but heart-made sisters that will grace their lives with much beauty and joy. Peach & Mallory are two sweet girls from Eastern Europe that are on their way to their forever family courtesy of Reece’s Rainbow. Ds Mama has committed to bringing these girls home and has started raising funds to get them here as quickly as possible.  The painting noted here is part of her fundraiser. Head over to read the details and consider participating.

Ds Mama is a wonderful resource, advocate and friend in our community and we are thrilled that she has decided to take these two beauties into her loving home. These girls couldn’t ask for a better mama!  She’s been a real blessing in our family’s lives as we’ve navigated this new world. She’s a peach of a mama- so it’s only fitting that she become the mama for Peach- and sweet Mallory too. Bless you on your journey dear- we’ll all be following along

Fave-O-Lit Friday: Oz Squad

Dear friends & family;

With the recent onslaught of media coverage surrounding the word retard. Sarah Palin has unwittingly become the Momma Bear defender of all children with Down syndrome. It is important to our families that she be educated in disability history and why it is important that she not politicize THIS particular issue. It is important that she use her public platform to defend people disabilities and help others who will listen to her undrestand that the word retard hurts all of us deeply. That it doesn’t matter who you are, please do not use this word and please understand that it hurts our precious children when you do.

I belong to an advocacy group that works to educate people about Down syndrome. We are sending an open letter to Mrs. Palin- a non-partisan one…- to help her understand how important it is that NO ONE be allowed to use the word & that when she speaks, she represents all of our families and and our children that have Down syndrome regardless of politics because she is such a public figure. Please come join us in reaching out to her by signing our letter.

Thanks so much for your help!

http://ozsquad.blogspot.com/2010/02/dear-sarah.html

Fave-O-Lit Friday

 

Dear Mrs. Palin, It’s not ok for anybody to use the R word. Your dear friend Rush included. I know you know this. Please don’t let politics affect your ability to defend your dear little one. Spread the word to end the word Mrs. Palin. Use your power for good. Sincerely, This Momma

PS: I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities

Angels we have heard on high!

 

Won’t you please consider donating to an adoption grant fund for a child who needs a home? Reece’s Rainbow is a non-profit organization that helps children who have Down syndrome internationally find their “Forever Families”

Our family is donating to Jeffrey I chose him to post about on picture alone. I know it might have been more helpful to have picked a child who there was more of a background to tell you all about. In Eastern Europe it is not uncommon for babies that are born with a diagnosis of Down syndrome to be taken to orphanages. They are able to stay in their baby homes typically until the age of 3. Around that time the paperwork is begun to move them into institutions. While some can still be adopted after that time, it does not appear common. That’s where Reece’s Rainbow comes into the picture. This organization was started by one mother who had the good fortune to give birth to a child that has Down syndrome 6 years ago. Since that time she has become a passionate advocate for children and families of children who have Down syndrome. Her organization started raising money and assisting families in the process of adopting children that have Down syndrome. In other countries these children are typically viewed as outcasts and unable to learn and set away from society and the stimulation and love they desperately need. Before my life as a mother I used to work with adults that had a variety of developmental diagnosis and had lived the majority of their lives in institutions. Once they were able to move into their own homes and begin receiving one-on-one attention in a loving environment- they did learn. They began doing the everyday household activities that they were believed to not be capable of- it turned out they were just never given the same opportunities to learn and grow and be loved that you or I had growing up. So I can testify that if an adult with a diagnosis of the like of severe to profound mental retardation can grow and learn- then the possibilities of a very young baby or child that may have an accompanying diagnosis of mild to moderate mental retardation along with Down syndrome is fully capable of living a wonderful life- just like any of the rest of us- if, IF they are given that blessed opportunity.

Now- that is where you come into the picture. Won’t you consider adopting one of these beautiful children? Is that too much?- how about contributing to an adoption grant fund that will go directly to a specific child’s waiting Forever Family, that is just trying to raise the money to bring their little one home. That is what our family can do at this time and is doing. As I typed I kept going back to their page debating picking another child to post about that there is more information to share- a personal touch that might draw you in and make you more likely to give a few dollars. But in order to do that I would have had to remove sweet Jeffrey’s picture and I just couldn’t bring myself to do that. Maybe by the time you go to their website there will be more information about him- maybe not- but maybe in the process you will read about another little child and that will touch your heart and spur you on to donate- or adopt. So I decided to add a few more children’s pictures in hoping one of them would touch your heart’s as well. The Christmas Angel Tree Adoption Grant Fund highlights specific children that you can donate too. We chose Jeffrey because he is noted to be at high risk for institutionalization due to his age (these children are noted in red) and he had very little money currently in his adoption fund.

We are so blessed in this country to have so many great resources. The understanding of Down syndrome and the potential of a person born with this diagnosis really lies in the care they are able to receive. If they are encouraged, and expected to do well and given all of the love, health care, education and engagement that a typical child is- then their future is wide-open just like any of the rest of your children. The future of children with Down syndrome has really changed in the last 10 years. With the help of Early Intervention and adequate medical care- these children are more like your other children then they are different. They have conditions that can be medically managed- they are not outcasts that have no potential as they are viewed in less developed nations.

There are a number of families in our community like Lisa’s and Michelle’s that have read about these dear children and have made the leap of faith to begin their adoption journey to bring a new heart into their families. Go read their stories and get to know these amazing families.

Please consider helping a child find their Forever Family before they are faced with being institutionalized for the rest of their life. Some of these children need the care our medical system is able to manage and some don’t have any health care needs. Please at least take the time to come over to Reece’s Rainbow and meet these little darlings and consider making a donation.

And one last plea to my Corner View friends. The number one thing that prevents a child from being donated to or adopted is a bad picture. If the child was having a bad day and that is what was captured- that is all there is for any potential family to go on- and more often than not- that causes the child to be overlooked- for another child who was having a better child and maybe was a tad more photogenic. You,my corner view friends live all over the world and are amazing photographers. Would you consider contacting Reece’s Rainbow to see if there might be something that you could do- to see if it might be possible that you could help take good quality photos- so that one instance in time is not what is standing between a child finding it’s Forever Family  or living a life of institutionalization? What a difference a gift of your time and talent could make in the life of a sweet child.

Happy Holidays and Season’s Greetings to all- Please let your heart be filled with the joy of these children and their potential.

From our family to yours- with love and hope.

Quail Day: Food and Love Week continues

IMG_1298

First for the love- of now and of health and small ones. For those of you asking for an update; the Quail was taken to the ER this past Saturday after finding a temperature of 103.2. Her chest and ears were clear, her fever dropped and her flu test negative; but we were told if her temperature were to go above 101 again to start Tamiflu as that would most likely be the culprit. It did, we did and by Monday her fever abated but her breathing was a bit ragged. Another trip to her doctor and they could hear a few wet spots on her lungs now so an antibiotic, a steroid and a breathing treatment were added to the regimen. Yesterday we went back again and indeed it is pneumonia and there are still crackles and wheezes. We are to return tomorrow and if she still sounds wet we will change her regimen. She’s been home with Lovey and I for the week, therapy cancelled, happily snuggled in. Most likely this will repeat next week. Thankfully the rest of us seem to have been spared to date. Please think warm-chicken-soup healing thoughts for our dear bird.

When we last left off with nursing and the Quail on Monday’s post I was mentioning our transition from a SLP to Kathy, an OT at Pediatrics Unlimited. When I called her to ask for a second opinion and told her what the SLP had said, her response was that, “Teaching babies to breastfeed is what I get paid to do, when can you come in?”. When I showed her my collection of goodies that I’d been trying to use on my own for the past five and a half months one of her first comments was that a Z-vibe is a last resort and there are a number of things/exercises/activities/positions/etc that we should really look at first. While we had been working with the first SLP I had been googling and reading other families experiences with trying to learn to nurse a baby with hypotonia, or muscle weakness which is a hallmark in Down syndrome. There are a number of oral-motor development tools that can easily be purchased by lay people. One which you hear people in this community refer to frequently is a Z-vibe. I had gotten one and along with a Nuk brush  and began to try to use them in a simplistic manner to stimulate the muscles in the Quails mouth. When I had asked the SLP about these tools, since she would be familiar with them by trade she had indicated it wouldn’t hurt to try but offered no guidance in terms of appropriate or inappropriate usage, frequency, position, or possible ill-effects. So I had gone merrily along just inserting them into the Quail’s mouth before nursing thinking I was stimulating her muscles and that would help “waken them” and she would nurse better.

The difference in evaluation between the SLP and our Kathy was night and day. The SLP never even looked in the Quail’s mouth or held her. She watched me feed her a bottle and watched the milk slip out of the right side of  the Quail’s mouth while she was hooked up to an oxygen saturation machine every other week for 3 months. I didn’t know that there was more to be done. I was asking for help breastfeeding but the SLP was focused on just getting her nutrition through a bottle even though I said we wanted to breastfeed. To be fair to her we had not even been able to get her to use a bottle the first few weeks- she was too tired and weak. We were using an SNS and a syringe.  And as Lovey has pointed out when people talked to me about the trouble with breastfeeding I was quick to say that I didn’t care if she ever breastfed. I really need to be careful to qualify that statement. What I mean is I won’t take it as a personal injury or insult to my ego if she doesn’t. I fully get the impact and help it can give her with her development and ensuring better, safer management of eating solids and speech development and clarity in the future. I get that it will exercise her mouth in a way that can’t be entirely replicated with other exercises. I want that for her, I want her to be able to safely, happily and normally enjoy the foods her family and friends do. I want her speech to be clear and understandable so it doesn’t stand in the way between her and what she needs and wants. So it isn’t one more thing that makes her feel awkward or shy or defeated like she shouldn’t even bother with people. I want her to feel and sound confident. And now is the time that we can give her the best start in that direction. Now with working on this we can have an impact that just ignoring the issue or deciding, “Well, she’s doing well enough- she drinks some from a bottle and is growing essentially ok”. It doesn’t mean I don’t accept who she is or any future limitation she might experience. It means talking and eating are essential to everyone I know- and whether we all realize it- these are learned behaviors and the Quail’s learning needs might be a little different then the average baby. But she can learn and that’s what we as her parents are here for. But most people when I talk about it think it is some mother-trip that spurs me on. And that is not it. It isn’t about me. 

One thing that hadn’t occurred to me and might be a useful tip for someone struggling with nursing. I had tried a breast shield back when the Quail was about 3 mos old at the recommendation of the LC. But that wasn’t enough sensation to encourage her to nurse. Kathy said it wasn’t meeting her sensory needs. She had us switch over to using our Dr. Brown’s bottle nipple over my nipple- that is the thing that has given us success in nursing. I haven’t been able to wean from it yet- but it’s what gets her able to latch on and keep my milk flowing (although here you have to be careful too because it could reduce your milk supply if it isn’t working or baby isn’t latching properly.). But without it we wouldn’t be nursing at all at this stage. Also we had heard that Dr. Brown’s bottles were the bee’s knees 3 years ago- not the case now and we have gone through a variety of bottle choices at different stages as the Quail’s ability to take a bottle has progressed. Initially the SNS, then the syringe, then the soothie, then Dr. Browns, then breastflow and now a ventaire with a comfort-latch nipple.

Since August 3rd, 2009 we’ve been seeing Kathy, weekly to work on feeding issues- I so wish I would have known that there was better help and support to be had and what to look for in an OT/SLP. I wish I had known the variability in the practice of different SLPs and OTs. Sara Rosenfeld Johnson and her oral-motor strengthening protocol has been essential for us. Kathy has her training and follows her protocol with oral-motor issues. In fact Sara comes through her office twice a year doing evaluations. Kathy was kind enough to introduce us when we were there for an OT session the last time she came through. The Quail is a bit young right now to handle an evaluation as it involves approximately 2 hours of hands on, or rather hands in her mouth. We are thinking maybe next spring she’ll be more up for it. In the meantime I’m showing the Quail pictures of her new “Auntie Sara” so she won’t be so shocked when this stranger wants to get up close and personal! Kathy routinely holds the Quail and evaluates her oral-motor anatomy, her neurological and sensory needs, her suck-swallow-breathe reflex, her oral motor strength, and has developed and follows a plan with the ability to back up when we had trouble and look to the next step when we were mastering one step. She was aware of what gross motor issues we were experiencing that were affecting the Quail’s ability to get adequate nutrition (an extremely weak abdomen that with strengthening has lessened her vomiting tremendously- now she ONLY throws up about one ounce with each feeding) and referred us to PT when she saw the need was beyond her scope. As well as routinely asking if we had asked to see a pediatric gastroenterologist repeatedly until we finally took the gentle nudge and scheduled the appointment for evaluation for the reflux. We had been working on gross motor development at home with our EI but had not even been aware that the abdomen muscle weakness might be contributing to how much she threw up routinely. The abdomen is one more example in a long list of them; of how you can’t know what you have no experience with. I knew I wanted to breastfeed and it wasn’t developing. I knew she threw up alot. I knew that milk leaked out the side of her mouth when she drank from a bottle. I knew that getting good nutrition was essential to her ability to not have to have open-heart surgery in the future and prevent FTT being caused by her VSD. I didn’t know when to not use those oral motor tools when something simpler like your finger could be useful and perhaps more appropriate to address sensory needs. Certain exercises encourage certain behaviors. For example we were using lip-tapping to encourage her to open her mouth and root initially. That was good for encouraging breastfeeding. But at the point in which we are focused on; say the Honey Bear, or a spoon with solids, we start to veer away from lip-tapping because we want to focus on lip closure. In all our work we have never come back to that Z-vibe. Although we have occasionally brought out the Nuk brush. Most recently we started adding the finger brush into our daily routine of oral-motor exercises.

I could go on and on and I’m happy to talk to anyone that wants to go on at length about oral-motor issues/therapy. It’s definitely been the most structured and detailed of our therapies. And honestly after the first couple of months with the Quail I think most people would probably just have stopped trying to nurse and not considered her taking the bottle and a little dripping out as something that needs attention.  Our pediatrician certainly wasn’t concerned because she has been able to maintain her growth between  25%-44% on the standard growth charts. Same with our cardiologist and same with our EI. And maybe that is the case from some perspectives. I just know after getting no-where with the first SLP and having my idolized lactation consultants turning me away with little to no information other than a vague recommendation to find an OT or SLP that specializes in feeding that I wish I could go back and start the Quail with Kathy back when she was born. It would have saved me a lot of heartache and struggle and I have no doubt we would be consistently nursing now. We’re still working on it at 8 mos. 2 steps forward and 1 step back. But at least we’re still steppin!

We are wavering around another transition now. The Quail’s reflex to nurse is long gone. We had a period a couple of weeks ago where it seemed fairly evident that our attempts to nurse were coming to an end. But nothing is ever clear cut. Just as I was wrapping my brain around the notion of stopping altogether we stepped back from the edge of weaning and are continuing down a less dramatic but equally breathtaking path. It’s bittersweet to try to understand what the Quail needs. It’s hard to know when to let go of a goal, when to make a new goal, when to know you ‘ve done your best. Sometimes all it really is, is a matter of perspective.  A dear friend was listening to me was on about nursing the Quail and commented that I have taught her to nurse- which was the goal all along. It was not how I saw it- and yet when she said it I could see it as true. But more about that and the bittersweetness of it all on Monday.

Momma Monday- Food and Love Week kicks off

IMG_1853A few of the families have been reminiscing or examining feeding with their baby that has Down syndrome. I had replied to couple of these posts but then realized it was time for me to put finger to keyboard and document our own experiences with this arena. The interesting thing about it for me is when I started to write about it, it was long, and tedious, and I think anyone who hasn’t been in this situation reading it would be put off by the amount of time, effort and struggle that has come along with it when the history is summarized here. But I’m as surprised as the next mom that there is so much to say about it. And yet I’m not. I think it is the examination of such a basic function in our lives that is long. We spend the majority of our day eating, planning to eat, thinking about eating. Especially when the scope of our thrills as a newborn involve how to become bigger. They eat, sleep and poop, God willing. Most of us are don’t need to examine how this eating and nourishment happens. It just does. Especially by the time we are rested and recovered enough from gestating and birthing our babies to actually reflect on it.

I came home from the hospital after giving birth to Zuzu with a feeding plan and a couple of extremely sore neh-nehs. It wasn’t easy then either. But now 3 years later, what I remember is what I see- a happy, healthy, bounding about faun of a girl. Not how we got here. Time often erases the intricacies and intimacies of our life before we are able to examine them too closely. For the most part that is good, it’s self-preservation. It enables us to go merrily on and think about re-creating again.  

The Quail came out 8 lb 12 oz on a frosty Sunday morning in February. A little bit early, but not a little bit light.  She came out with a wail much like her sister and we began the long dance between mother and child of learning to nurse. I chose to have her at the same hospital that I had quite by accident ended up birthing Zuzu at. The Lactation Consultants there are amazing. I spent more time with them after Zuzu’s arrival then with her pediatrician. I was aware how utterly consuming and complicated nursing could be due to multiple warnings from mommas that had gone before me. I was fortunate enough to push past society’s conventions and nurse through my pregnancy with the Quail. Lovey and I questioned the notion of doing this and whether or not we should be actively weaning Zuzu many, many times. This wasn’t a decision we took lightly. Of course you can’t know what’s to come while you are planning for it. Zuzu’s continued perseverence and need for connection and comfort is strong. She loved to nurse and rub my swollen belly during those months. And after the Quail came home she immediately sank into a routine of nursing and reaching for her sister’s small hand to hold while she let down the milk for her. It is truly the greatest gift I could hope to witness.

In the hospital, after the Quail’s arrival, before her official diagnosis, the LC came to work with us frequently. Since I had difficulty with Zuzu, I just assumed it was a similar difficulty of getting her to latch and once we worked through positioning we would be set to go. I was armed and ready to adjust her latch as needed to prevent the trauma to the neh-neh’s this time. I was queued to the art of baby language analysis and ready to respond to her neh cries. I had the LC’s number on speed dial and wasn’t afraid to use it. I was prepped for the pain of engorgement  and had my little weekend warrior ready to nurse it to a comfortable fullness until the Quail could handle the supply on her own. I had my boppy, my Nursing Mother’s Companion, and my trusty Pump in Style Advanced. I was ready for Lovey to do the middle of the night feedings with a bottle and not afraid of nipple confusion. I had a couple sets of supplemental nursing systems and syringes ready in the event of a rough start. But you know what they say- every baby is different. Yes. The truest, purest, most inargueable statement. With all that preparation- both mental and practical, the Quail still had areas I hadn’t known to account for. Long before we received the Down syndrome diagnosis we received a hypotonia diagnosis.

Let me tell you what should have happened in a perfect world. In a perfect world, the pediatricians or lactation consultants that examined her- and there were a couple of each, should have explained hypotonia in lay terms and brought in their OT or SLP that is trained in oral-motor weakness to examine her and start either a referral to someone to work with us ongoing. They should have been weighing her after nursings to notice that she wasn’t pulling any colostrum out. But it’s normal for any baby to lose some weight after they are born and before the milk came in.

In hindsite I can say that should have been the plan. I guess, really, I wish that plan for mommas that come after me. In some respects there wasn’t an obvious problem. Except this. They did say hypotonia. The pediatrician’s that examined her couldn’t say definitely that she had Down syndrome until a karyotype could be completed. But the 3 things that led them to think she had Down syndrome were: 1. her hypotonia, 2. the difficulty she was exhibiting nursing 3. and the micro-expressions we would witness that bore some resemblance to classic portraits of a baby that has Down syndrome. The LC did print out an article about nursing a baby with Ds and the difficulties of it, an email address for a woman who she used to know that had nursed all of her children, including a baby that had Down syndrome a couple of decades ago and a vague suggestions to be sure to ask for an OT or SLP referral from my pediatrician. I went home thinking there might be problems ahead of us but not really understanding that indeed that was a definitive. Late in the afternoon, the day after we arrived, the LC had given a brief warning that if the baby wasn’t able to eat well then we would be extending our stay in the hospital but that it would be the pediatrician’s call when he examined her the next morning. We were given a stock of newborn bottle caps and extra syringes to work with. Fortunately I had a milk supply already established and my colostrum had already began the transformation. On that first day I was able to pump an ounce at a time and began the routine of pumping out what I could every three hours and trying to nurse the Quail according to a feeding plan that gave me a distinct sense of deja’ vu and a false sense of confidence.

It went like this:

1. Pump for 10-15 minutes to get the let down reflex activated and start to establish a good milk supply 

2. Set up a ‘just in case” bottle

3. Undress the Quail down to a diaper and start to wake her.

4. Begin brief oral-motor stimulation exercises such as rubbing the inside and outside of her cheeks,  gums and roof of her mouth for a minute or 2 to stimulate her suck-swallow-breathe reflex.

5. Bring her to the breast and attempt to nurse her for 5-10 minutes trying a variety of positions: cross-cradle, football, dancer’s hold

6. If at that point she has not successfully established a latch and began to draw out milk then move on to another method of feeding her so that she won’t be too worn down to eat. 

7. The choices are SNS or syringe with your finger inside her mouth to elicit the sucking reflex.

8. Repeat process every 2-3 hours.

9. If she doesn’t root, cry for milk prior to 3-4 hours, wake her and initiate the process on your own.

10. Document the number of wet and poopy diapers daily to ensure she is getting enough nutrition. She should have 6-8 wet diapers and 1-3 poopies each day. If you are not able to get that many call your doctor.

There’s alot of guesswork in those first few days of determining wet-newborn- nappies. We did our best estimations and 48 hours after the Quail’s arrival the pediatrician was comfortable with our level of understanding and dedication to feeding the Quail and agreed to send us home. Other then a few new vocabulary words this was not unlike our experience with Zuzu’s entrance into the world.

It took a few weeks due to a computer upgrade and hospital documentation system changeover for us to get the results of the kareotype. Three weeks later after 4 follow up phone calls to the geneticist and our pediatrician’s office, Lovey and I were having dinner with his parents and we received an early evening phone call from our Pediatrician, Dr. Dean informing us that he finally received the Quail’s FISH analysis back and the good news was it was negative for Trisomy 13 and 18 but did show 50 out of 50 cells analyzed a f inding of Classic Trisomy 21. He started down a litany of expected medical concerns that may accompany the syndrome, hyperthyroidism, hearing and vision loss, the need for routine follow up with our newly established pediatric cardiologist for an early diagnosed small to moderate ventricular septal defect and possible pulmonary hypertension; potential delayed developmental milestones and the possiblity of mild to moderate cognitive functioning that can’t really be predicted this early on. Lovey and I sat on the phone quietly listening together and then I asked for a referral to Babynet to get started finding out what services would be available to guide us through the next 3 years. After we hung up, Lovey and I hugged and I did cry a few tears of anxiety. I tend to run towards the anxious side in general.  Lovey went back out to the kitchen to his parents and I called mine who had recently returned to their home in the middle of the country.  I distinctly remember a shift happening in my thought process earlier that afternoon as I waited for that phone call. I had been pressing the doctors to get a definitive diagnosis back to us and suddenly, probably about the same time the final fax was received in Dr. Dean’s office I saw the blessing of getting to know the Quail without a diagnosis attached to her. I had been able to spend a few hours actually grateful for not seeing her through the diagnostic light.

Babynet, our state’s Early Intervention service or Birth to Three provider; called back a few days later to schedule an intake, and a couple of weeks later Jodie came to meet us and the Quail. We told her of our main concern of how the first few weeks of feeding the Quail had gone and how we had not yet successfully established breastfeeding and when she drank from a bottle a fair bit dripped out the right side of her mouth. We related the struggle to get enough food in her the first couple of weeks. We had been spending approximately 45 minutes every 2-3 hours following the letter to the plan.  Our saving grace was that the Quail was an excellent sleeper. So after she ate, whether it was due to her exhaustion from the nursing session, regular newborn sleepiness or the breastmilk jaundice she had for the first month, she always went back to sleep easily.  When Zuzu was home her first week we had done a similar plan but she was mostly nursing and we were using the SNS for a couple of feedings with Lovey during the night so I could rest. During one call to the LC after the first week they pointed out that the SNS was really only for the first 5-7  day to get started. After that point the amount of milk needed with each feeding couldn’t be sustained with the SNS. It was about this point with the Quail as well that feedings were becoming too drawn out for us to continue our current plan. At the end of the first week she was staying latched on my breast and making a nursing motion long enough to look like a full feeding and acting contented mostly afterwards- well actually wiped out would be more accurate. After one day of just having her nurse she proceded to not poop for the next 36 hours. At that point I realized that although she was latching she wasn’t strong enough (the hypotonia at play) to draw the milk out. I panicked and got out my box of bottles from Zuzu’s early days. We started with a Dr. Browns which had previously been the bottle de’jour to coordinate with nursing. It was too difficult for her to get milk out of. After fumbling around briefly with a series of other bottles that were either too difficult or the milk leaked too eaily out of her mouth we settled on a Soothie. She still leaked milk but it was better then the alternatives. She gradually sped up her drinking in the next week and we were able to get 3-4 oz in about 20-40 minutes. I was still attempting to nurse but the frequency was dropping off as my success plummeted.

Jodie referred us to an agency that had a couple of SLPs who focused on feeding issues in newborns and they set us up to come in fairly quicky, still by this point we were 2 months into it. We met with the SLP and explained how long it was taking the Quail to drink, the milk leaking out while she did and the lack of success in nursing. She also by that time had begun throwing up frequently and in what looked like large amounts with almost every feeding. Both immediately after and throughout the following hours. Fortunately she wasn’t distressed or obviously pained by this. Unlike her sister who started reflux meds at 3 weeks due to her pained behavior, arching away from the bottle and tears (hers and mine)  with each feeding.

The SLP’s  first concern was if drinking from a bottle; which is easier then nursing, was causing the Quail any distress. It is common in babies that have heart conditions to have their oxygen saturation level  drop while drinking as well as their respiration rate increase. We started each session with the Quail drinking her bottle while hooked up to an oxygen saturation machine. Fortunately for the Quail she didn’t have trouble with this. The heart condition made the SLP pretty nervous and she consulted with the cardiologist who reassured her that there was no trouble with the Quail learning to nurse.  The other main concern with a lot of babies with heart conditions is their growth rate. And with the Quail throwing up so frequently as well this could have been a major factor. Fortunately her growth has always stayed consistently between the 25%- 50% average on the standard growth charts. For a baby that has Down syndrome and a heart condition and refluxing behavior, that is really phenomonal. We spent the next 3 months with every other week appointments with the SLP essentially doing the exact same thing. I would ask each week about learning to nurse and she felt we needed to get to the point where the Quail would clearly not need open heart surgery to repair her VSD before moving on to practicing that. I continued to ask and she continued to say the same thing. I finally asked outright for her to give me a list of exercises that would teach the Quail to nurse. She said that there weren’t any.

At that point we decided to take a break from the sessions for a couple of weeks and I started asking around to other mommies if they had suggestions for ways to help us learn how to nurse. More to come on that and how we spent the last 3 months  to come later this week.

Right now I have to go put up the night’s pumped milk, lay the baby down to bed and nurse the toddler.  And I feel so very blessed to be able to do just that.

31 for 21, day 20: Let’s help a family out!

http://www.thet21travelingafghanproject.com/2009/10/flege-family.html

 

The hubby of The Flege Family is having open-heart surgery. His job doesn’t have disability or insurance as so many don’t these days. You can come bid on some nifty items up for auction or just make a donation. All proceds will go directly to the family to help them out in their time of need. They would do it for you- so let’s show em that they aren’t alone!

Please help get the word out on this opportunity and post it on your blog or FB status or My space!

Fave-O-Lit Friday: 31 for 21: Day 16 A Credo for Support

A Credo for Support: People First Version

Authors: Norman Kunc and Emma Van der Klift

Description:

This powerful 5 minute video offers a series of suggestions for people who care about and support someone with a disability. These suggestions are intended to prompt viewers to question the common perceptions of disability, professionalism, and support. Designed for use in presentations, in-services, staff training, and orientation programs, this video can be a provacative catalyst for dialogue on these issues. The video is set to music.

Originally produced in 1995, a revised version was created in 2006 intended to be more respectful to people with disabilities. In this revised version, the credo was not reworded but is read by members of People First of San Luis Obispo, California. The self-advocates are shown on screen as each reads a line of the credo. The original version, narrated by one person with only words shown on-screen, also continues to be available

Contact Info:

Name: Norman Kunc and Emma Van der Klift
Title: Axis Consultation and Training
Address: 340 Machleary Street
Nanaimo, British Columbia V9R 2G9
Canada

http://www.normemma.com/

Here is the revised video version that is read by members of one People First community:

A Credo for SupportGrow

A Credo for Support

Throughout history, people with physical and mental disabilities have been abandoned at birth, banished from society used as court jesters, drowned and burned during the Inquisition, gassed in Nazi Germany, and still continue to be segregated, institutionalized, tortured in the name of behavior management, abused, raped, euthanized, and murdered. Now, for the first time, people with disabilities are taking their rightful place as fully contributing citizens. The danger is that we will respond with remediation and benevolence rather then equity and respect. And so, we offer you a credo for support.

Do not see my disability as a problem. Recognize that my disability is an attribute.

Do not see my disability as a deficit. It is you who see me as deviant and helpless.

Do not try to fix me because I am not broken. Support me. I can make my contribution to the community in my way.

Do not see me as your client. I am your fellow citizen. See me as your neighbor. Remember, none of us can be self-sufficient.

Do not try to modify my behavior. Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can.

Do not try to change me, you have no right. Help me learn what I want to know.

Do not hide your uncertainty behind “professional” distance. Be a person who listens and does not take my struggle away from me by trying to make it all better.

Do not use theories and strategies on me. Be with me. And when we struggle with each other, let me give that rise to self-reflection.

Do not try to control me. I have a right to my power as a person. What you call non-compliance or manipulation may actually be the only way I can exert control over my life.

Do not teach me to be obedient, submissive, and polite. I need to feel entitled to say no if I am to protect myself.

Do not be charitable to me. The last thing the world needs is another Jerry Lewis. Be my ally against those who exploit me for their own gratification.

Do not try to be my friend. I deserve more than that. Get to know me. We may become friends.

Do not help me even if it does make you feel good. Ask me if I need your help. Let me show you how to better assist me.

Do not admire me. A desire to live a full life does not warrant adoration. Respect me for respect presumes equity.

Do not tell, correct and lead. Listen, support and follow.

Do not work on me. Work with me.

31 for 21 Day 13 Famous folks

Baby on Boppy

Baby on Boppy

One day I was looking up more information on the Sears family- You know Dr. William Sears- the infamous parenting expert and pediatrician and parent along with his lovely wife Martha; of 8 children. Their 7th child Stephen has Down syndrome. Well I came across a Wikipedia page listing other famous families that have a child with Ds in them. Including Charles Darwin’s family and Charles Du Gaulle. I was looking for that page today and had no luck.

 

 

 I did come across these websites though:

http://www.downrightbeautiful.org/famous-parents.html

http://www.about-down-syndrome.com/famous-people-with-down-syndrome.html

http://childrenrspecial.wordpress.com/famous-people/famous-down-syndrome-people/

http://www.rapideyeproductions.com/factsheet.html

http://www.cdadc.com/ds/high-achieving-people-with-down-syndrome.html

And a  lovely article from Melissa Riggio:

http://kids.nationalgeographic.com/Stories/PeoplePlaces/Downsyndrome

But- sadly- as I said I cannot find the Wikipedia page. I know it was a category that was something along the lines of “famous parents of people with Down syndrome”. Perhaps it vanished?