Loneliness

Lately I have been feeling very lonely. Not lonely in the sense that I have no one to talk to or no one around. Lonely because we're different. Well..... I'm different. I'm the only person in my group of friends that has child with special needs. I didn't notice it much when Sean was a few days old or a couple of weeks old, but now that he's getting older (yeah 4 months is older), it's really starting to show.

I get weepy when I see pictures of my friends' kids doing things Sean should be doing. I get teary when I hear evaluators say that my son is behind with his motor skills. I make myself depressed when I think back to when Meredith was 4 months old and I was holding her up to standing.

Yes Sean will do all of the things Sean is supposed to do in his own time. Just like any other kid. That fact is just not making me feel any better lately. I don't know why I'm so discouraged. I can't help it either.

I decided today that I had to be ready to get out there and meet other parents like me. Parents of kids with down syndrome. I need to feel like I'm not alone. I crave it. I need to know I'm not the only parent who feels this way. I need to know that I'm not the only person who feels like my kid is getting left behind. I need to know I'm not the only mom who feels she can't looks at friend's pictures of their kids.

I'm a part of a message board online for moms of children with down syndrome, but it hasn't helped me much. I can bounce ideas off of these women, but I crave physical eye to eye contact. I need to see with my own eyes that I'm not alone.

So I went to the website ndss.org and there was a phone number to a group in my area. When I called, that group was no longer together. I was crushed. The next closest group was in Manhattan. I sat at my kitchen table with my head in my hands and cried. I just cried. I was finally ready finally made myself call and it wasn't around. I don't know if I ever felt more alone. I truly felt & feel like I'm the only one around here with a child with down syndrome. I know in my head that I'm not, but I hardly ever see anyone around here with down syndrome.

What I did do was to email the woman from the Manhattan group. I didn't know what to say, but I needed to reach out. And I did. She forwarded my email to the group and there are people from Brooklyn. Right now it's very abstract. I feel like the new kid in the class.

I want to scream "I'm just like you. Please play with me", but then again I don't. I don't want to be just like them. I don't want it to be painfully apparent that my child..... My perfect child; maybe isn't so "perfect". I hope this awkward period ends soon. It's pretty painful. I don't remember ever feeling this way before. I just want to get passed the "getting to know you" phase. Not that I want instant bff standing, but a good solid connection would be good.

Wish me luck.

Making turkeys for 2010

Yesterday was one of those "stay inside with some hot cocoa because it's miserable outside" kind of day. So we made hand & foot turkeys. First we traced the outline of Meredith's feet and then we cut them out to use for the turkey's body.





Meredith actually sat still for this part. Then she helped cut them out. Her teacher said that she should start using scissors. No matter what I did or what I showed her about using a scissor, she still couldn't grasp the idea. It didn't matter. She had fun.



Then we traced & cut out the outline of Meredith's hands to use as feathers.





We then glued the outsides of the feet together at the heel and the hands together at the wrist making sure all the fingers were separate. Meredith glued the pieces together & then glued the feathers to the back of the body; wrists to heels.











Then we cut triangles from the hand outlines out to use as the wattle on the turkey's neck.





Meredith glue this on and then we glued on the eyes. The eyes we had left over from a past project. You can easily draw eyes with a white crayon, paint eyes or use foam shapes. Then we hung them up.









Today was Sean's turn.

Trust

That's what my little man has for me. Sean hates bath time. I don't know if it's the naked part, the wet part or a combination of both, but he HATES it. Every bath for the last four months has been complete with screaming until he turned blue and ending with complete exhaustion for both of us.

Last night I decided to try something new. I took a bath with him. I sat in the warm water and Rob handed Sean to me. At first I just kind of caressed him with a wet washcloth and then I started to submerge him. He started to whimper, but I was able to reassure him. I was able to get him completely wet & washed. He didn't scream once. Amazing!

The whole time, he looked into my eyes. It was a surreal kind of love that I felt from him. I felt his trust and instantly melted. My little man trusts me. He trusts that I will make everything better.

After he was clean, I let him stay in my arms and just spoke to him while I spilled warm water over him. He was so relaxed.

Then I swirled him in the water and sang to him. He smiled & laughed. It was the first time in four months that my son enjoyed a bath. After we were done, I called Rob to come take him out of the bath & wrap him in a towel. I showered and got out.

Yesterday was Sean's 4 month birthday. I can't believe he's 4 months old already. In so many ways he's very much like a newborn and in others he's like an old man. I made the mistake of looking at pictures of Meredith from when she was 4 months old and made myself quite depressed. Meredith wasn't doing extraordinary things, but she was doing more than Sean is currently doing. I know I shouldn't compare my kids, but it's hard. I told a friend last night that if I wasn't always waiting for him to be behind, I probably wouldn't be so concerned about it. If he didn't have down syndrome, maybe I wouldn't worry about it so much. Who knows?

He's doing wonderfully. In just the last few weeks he's holding his head steady and babbling up a storm. I'm so thrilled that he's holding his head steady.



Here's how I keep Meredith involved





Meredith sings



Happy 4 months to my sweet baby boy

Trials & Tribulations of Breastfeeding

After successfully breastfeeding Meredith for 16 months, I thought I'd be a pro at breastfeeding Sean if I decided to go that route. I was on the fence about whether to nurse him or feed him formula because I really didn't enjoy breastfeeding with Meredith.

For 16 months I waited for the moment when the lightbulb would flash & I'd love nursing Meredith. It never came. By the 2nd week of painful & raw nipples, waking up to nurse every 1.5 - 2 hours night and nursing every 2-4 hours during the day I cried. I broke down & cried that I just wasn't cut out to breastfeed. It was to taxing on my psyche. Then Meredith decided she didn't want to take a bottle and because I never wanted her to cry & fight to be fed, I made the decision to stop trying to give her a once in a while bottle and exclusively breastfeed her. I dealt with the agony of flaming nips and lack of sleep so bad I was delusional.

From the start we had some issues with latch and position. I had an oversupply and Meredith never had a yellow, seedy mustard colored poop. EVER! Every time we'd goto babies r us, she'd poop so much she needed a change of clothes & more than once she left naked because I had forgotten to pack extra clothes. Granted I could've bought them, but it was the point that I didn't want anyone else to see my ineptness at packing a diaper bag. Did I mention she didn't ever have a mustard yellow poop? Oh how I tried to get her to have a yellow poop. I was always told that's the mark of a well fed breastfed baby. "That's how you'll know she's getting enough hindmilk." Sure.

I felt like such a failure that it took me so long to figure out nursing her. I couldn't believe that something that every other mammal in the world was able to do, but me. What the hell was I doing wrong that I couldn't figure out all these issues?

Slowly, I started to figure it out. I took all the information I was receiving & piecemealed it together. I finally put Meredith in a cockeyed football hold, held her all sorts of crooked and balanced myself on one butt cheek to get her latched on properly. And by properly I mean with a good seal on the breast. She nursed for 10 minutes, popped off & promptly fell asleep. We repeated this scenario over & over until I finally had enough. I finally said to myself this is a relationship and it has to be 2 way. I won't make her fight for the bottle, but damn it she better let me be comfy.

I was so worried that by only nursing for 5 minutes from one breast that she wasn't getting enough to eat, but apparently I was wrong. She grew consistently and always seemed satisfied. We also had the added complication of her having GERD. Fun times. Now Meredith didn't have all of the classic signs of GERD. But she had some. And I had to fight with the pediatrician for 3 months before he finally listened to me.  Before I switched drs in the practice to get a 2nd opinion & some results. I was assured that babies with gerd try to regulate themselves by wanting to sleep in certain positions (the side & belly for Meredith), eating more frequently so they're able to empty the stomach faster, etc.

As soon as Meredith was put on zantac she was a different baby. She ate better, was more content, she stopped spitting up for hours, etc.

What did I learn from all of our trials & tribulations? I learned to think outside the box when it came to breastfeeding correctly. No amount of information can prepare you for a baby that doesn't follow the breastfeeding "rules". But once we figured out our niche, she nursed like a champ. For 13 out of the 16 she nursed, she nursed everywhere & anywhere she wanted. Even a NYC subway. And she'd latch on & stay on. Woohoo!! I'm good at this. I don't like it, but damn it..... I'm good at it. By the time Meredith was 12 months old, I was done with breastfeeding. I felt like I had paid my dues and reached my goal of nursing to at least 1 year old. But Meredith was still nursing every 2-4 hours and showed no signed of stopping. I opted to slowly wean instead of going cold turkey. I weaned from night feedings first. It was so hard for her. Rob & I decided that he'd take over going into her when she woke. Then I eliminated daytime nursing. I offered her sippies & snacks in place of nursing. Some days it worked. Others it didn't. Slowly I eliminated them. She was only nursing 2x a day. Nap time & bedtime. After a week of that (at 16 months old) I just cut her off. She never looked back.

When I got pregnant with Sean I wavered back & forth about breastfeeding him. I was still nursing Meredith and it was just a constant reminder of how much I didn't care for breastfeeding. I always knew though that if I did breastfeed he'd get a bottle right from the start. I wouldn't wait to recommended 6 weeks to introduce one "to avoid nipple confusion" or whatever it is they're recommending now. There would be no way I was going to have an exclusive breast kid on my hands again. I just couldn't face the thought of it ever again. It was to daunting. I knew I wanted Sean to have the health benefits of breast milk, but quite frankly the thought of pumping night & day for him was a lot to bear as well. My little brain just couldn't handle that kind of stress. So if in the end I did formula..... then that's what it would be.

Then we learned that Sean had down syndrome. And I learned that a lot of children with down syndrome have low muscle tone and that nursing helps to improve that. I also learned that children with down syndrome are more prone to upper respiratory infections and ear infections. My first thought was "Damn! Now I'm almost forced to breastfeed." It was almost a challenge from mother nature. "Ha ha!"

I decided to accept her challenge. I read up on issues associated with nursing a child with down syndrome. I read up on nursing positions like the dancer hold to help support Sean's chin & jaw while he was nursing. I felt like all I did was read about all the ways in which to help Sean overcome his low muscle tone (which by the way we had no idea whether he had). I needed to be prepared. I knew Sean would be in the nicu when he was born & everyone had drilled it into my head that he would most certainly have low muscle tone. I was also scared out of my wits when the nicu director told me that unless Sean was eating at least 30cc of milk at a feeding he would not be discharged from the nicu. I was also told that because he would have low tone that it may make sucking from a bottle difficult as well. Crap! Now I needed to figure out how I was going to help this kid eat from every which way. 


I spoke to lactation consultants. One of whom said I should reintroduce the breast to Meredith in order to stimulate the breasts and produce milk before Sean was born. This would ensure that I had a decent milk supply and that he'd have at least 30cc of milk when he was born. Are you kidding me? It took me forever to wean Meredith. There was no way in hell I was going to put Meredith back to the breast. Not to mention that I just couldn't see an almost 2 year old on my breasts. It may work for some women, but once a kid can tell me that it tastes like cookies (M never did that), they have got to get off the breast. 


I had one lactation nazi telling me how horrible the hospital was that I was delivering at. She told me all sorts of horrible things that my ob would do & say and how horrid the nicu was. I would just like to point out that Maimonides actually has a fabulous nicu & my ob was remarkable. Not to mention that he has never done anything, but advocate breastfeeding to me. In fact he's the one who helped me breastfeed Meredith when I delivered her. Without him I never would've nursed her at all. Anyway...... I had so much advice coming at me and none of it fit me. None of it was anything I was willing to do or could do. I had to figure out a way to ensure my baby was released from the nicu & then I could worry about it at home. 


So that's what I did. I nursed Sean while he was in the hospital and I also gave him formula. He ended up having hypoglycemia in the hospital. I needed to make sure his sugars were high enough and I needed to do whatever was necessary to ensure he didn't get an unnecessary IV and make sure he wasn't kept there. I needed my baby home with me where we would figure it out together.


Still under the impression that Sean's problems were all from lack of muscle tone I did what I could to help him. I hired yet another lactation consultant to make sure his latch was good. I thought maybe because I didn't have any sore nipples or pain that maybe it was just his latch. If I could just help him with that. The lactation consultant said his latch was good. Check! I spoke to the cardiologist & pediatrician about his suckling. Everything looked good there. He had a strong suck. Check! Ok so why is he getting so much air? Why couldn't he stay latched for longer than 5 seconds? What was his problem? 


He was diagnosed with reflux at 4 days old. We knew right from the start that he had reflux. It was unmistakable. Not to mention that there is a strong familial tendency for reflux. So he was started on zantac. It worked great for a few days. It hasn't worked since. We've tried prevacid as well & that only made things worse. We're still working on this issue. 


We were told his palate was short, but he had good muscle tone in his mouth. "Massage the roof of his mouth & gums with your pinky. Push the gums out with gentle force. Because the gums & bones are still soft we can stretch them some." Ok started that. It would also help him be more aware of his mouth and he'd suck less air. OK..... 


Nothing helped him. He still sucked in so much air whether it was the bottle or the breast. He continued to come off the breast after a few seconds during an entire feed. Feeding was taking a lifetime. 


Well now what? We've already confirmed that his suck is strong. We've already confirmed that the muscle tone in his jaw is good. So I had to think and think and think. I came up with nothing. This was not like anything I encountered with Meredith. She had a great latch and never came off once she was latched properly. 


I went through all the tricks I had learned while nursing Meredith anyway just in case there was something I was missing. I held him upright so that he controlled the flow. Didn't help. I propped him up on 2 pillows, on a pillow on the arm of the chair. I laid down & nursed him, rested him on the boppy leaned into me with my knee behind the boppy while nursing. 


I thought maybe I had an oversupply like I did with Meredith. So I took steps to correct that. I pumped until I felt a let down and then had Sean latch on. That way he wouldn't have to work so hard with such a forceful & fast flow. He still came off the breast constantly. I nursed him while I was leaning back so he'd not only work out his jaw muscles, but my milk wouldn't come out as fast. Didn't help. I nursed him 3 feedings on one breast & then 3 feedings on the other breast. Still nothing. Crap! Well now what? 


When Sean had his first early intervention evaluation it was revealed to us that it wasn't Sean's muscle tone that was an issue because that was pretty good. It was his suck-swallow-breathe coordination. AHA! He couldn't coordinate the three things. That's why he was constantly coming off the breast. He had to come off to not only get a breath, but to right himself. He must've felt that he was off kilter and needed to readjust. We were told that feeding therapy would help us with that. 


Then we had our first therapy (I use the term loosely) session with our first feeding/speech therapist. She did nothing, said nothing and didn't worry about Sean's uncoordination. She was more concerned with Meredith not speaking. We had a couple of weeks with her & then I had enough. We weren't benefitting from her so I found someone else. 


When Rosie first came she did her own assessment of Sean. She said that Sean's muscle tone in his jaw was good, but it could be better. She also pointed out that Sean's right side had less muscle tone than the left. She fed Sean a bottle so that she could see firsthand what his issues were & try different positions to see if they helped at all. She also tried rocking, humming, etc. 


Here's what we have found has helped:


Rocking
Holding his hand or him holding onto my shirt
nursing to classical music with a discernible beat
paying attention to his sucking rhythm. By paying attention we're able to see whether he's pushing the bottle out of his mouth or just having a hard time getting coordinated. When he pushes it out he probably needs to be burped. If he's having a problem we switch positions & try again. 


We have now tried every position known to man short of balancing on one foot while nursing and singing.

Here are some positions that I have found help:

Propping Sean on a boppy with a small throw pillow under his head from added lift & support
Scooping his legs in close to my body
Having him "look up" while he's nursing on his side
Having him propped almost upright with a pillow behind his head while resting on the arm of a chair
Propped up on the boppy with me playing the role of contortionist and almost laying my side

I have also found that even though his muscle tone is good I have to hold my breast while also supporting his jaw/chin somewhat with the same hand. It's almost a dancer hold, but it's more to remind him that he has a bottom to his mouth that has to work as well. It's also to keep him from suffocating since my breast is a lot larger than his head. It just sort of envelopes his whole face.

I have also found that lanolin put on his lips before nursing helps him get a good seal. It also helps him to not suck in his top lip. This works equally as well for bottle as it does the breast.

The bottle I have found that works best for us is the Learning Curve Breastflow bottle http://www.learningcurve.com/breastflow.  We were using the Dr. Browns standard bottles, but I felt that if he got more than 1 bottle using that he would come back to breast & have a shallow latch and we'd have to start all over again.

I would now consider myself successful at breastfeeding Sean. Not because we're so great at it. Not because he's so efficient. Lord knows we're not. I consider myself successful because we're getting there. We've even gotten to the point where I am comfortable nursing him in public. I was hesitant to nurse him in public because he would always come off the breast several times. While I'm not necessarily shy about my breasts or breastfeeding, it's sort of a pain in the ass to constantly be fighting with my kid to stay on the breast. Plus he takes a bottle. Not necessarily happily every time, but he does take one. So it has made it a lot easier for me to ease into nursing in public with him.

It's been a learning process for both of us. He is learning how to plan his motor skills and I am learning how to help him do that.

Will he ever nurse as efficiently as Meredith did? Maybe. Would I change one thing about our breastfeeding journey so far? Probably not. I have learned so much about myself, about Sean, and about nursing that I wouldn't change it for anything.

Some sites I have always found helpful:

www.kellymom.com

http://www.llli.org/FAQ/down.html

http://www.llli.org/FAQ/positioning.html

http://www.llli.org/nb.html

http://www.medelabreastfeedingus.com/for-nursing-mothers

And of course various message boards. Asking other women who are in the same boat as you is always great. You never know what someone else has stumbled on. Maybe they have different positions to try or different holds. Maybe they're just there to offer support at 3am because you're hysterical crying because you've got a 7lb kid attached to your boob constantly. Maybe you just need to hear that it will be alright and that whatever you're feeling will pass.

If you're reading this & you have any questions or concerns with breastfeeding, please feel free to contact me directly. I will do whatever I can to help and hopefully be able to point you in the right direction if I can't.

Is he mine?

Tell me what you think.

Here is a picture of me when I was a baby. I'm guessing about 6 months old? Maybe?



And here is a picture of Sean at almost 4 months old.

Wordless Wednesday

How's your extra chromosome?

The last few days have been interesting. We celebrated Halloween with friends on Saturday & went trick or treating on Sunday. We went to a festival on Sunday as well.

Saturday Sean was a bear. I didn't get him a costume just for Halloween because I didn't know if he'd be here for Halloween. I didn't know if he'd still be in the hospital from his surgery or if he'd even make it through surgery. It was just as well. It was cold.  Meredith wore the costume I painstakingly made for her. I sacrificed my waistline by eating candy so I could use the wrappers for her costume. She was a candy fairy. Meredith was not thrilled with her costume. She didn't want to leave her hat on and she wouldn't carry her tootsie pop wand.  I'm sure that if I hadn't tacked her wings directly to her jacket, she wouldn't have worn those either. I was so disappointed that she didn't ham it up more. In her defense she was tired from having not napped all day, but still. She was wearing candy for heaven's sake. She couldn't have cared less. She didn't want to walk and didn't want to sit in the stroller. We walked the Coney Island parade route and then stopped on the boardwalk to figure out where we were going to have lunch. We decided on Peggy's. We could have lunch & a much needed and deserved beer.












While we were there Meredith got her second wind. She hammed it up because she was delirious. She started dancing all over & then was playing on the stage.











On Sunday we went trick or treating. Meredith wore her back up costume of ballerina. This year Meredith got the concept that she was going door to door to get candy. She really wasn't thrilled with the whole idea, but she did what she had to to get the candy.







Then we were off to the festival. She rode a pony & again just didn't look thrilled. Rob & I decided that since we were there for her and she wasn't having fun that we'd just head somewhere else. So we headed back to our old block on West 4th Street. Meredith walked up & down the block & we said hello to our friends while we tricked & treated. It was nice to see everyone.









But that's where my fun ended for the day. While speaking to someone there, it came up that another woman's daughter (who also has down syndrome) was getting worse. I pointed out that down syndrome is not a progressive disease. This woman proceeded to tell me that it is in fact a progressive disease. So I'd like to now take the opportunity to clear some things up for anyone who is unclear what down syndrome is.

Down Syndrome is a set of characteristics that affect a person who has three number 21 chromosomes. Every person has 46 chromosomes. 23 come from each parent. A person with Down Syndrome has 47 chromosomes. Your chromosomes cannot change. They cannot deteriorate. Down Syndrome is not a disease that has a specific degenerative path. It also does not have a regenerative path. It's not like there is anything I can do change his chromosomes or anyone else's for that matter. I'd also like to point out that everyone has schmutz on their chromosomes that affect all sorts of things. Schmutz on your chromosomes affects how your genes act or don't act for that matter.

For instance, there are between 300 & 500 genes on the 21st chromosome. These genes affect various things. When there is something "wrong" in the genetic code or there is extra (trisomy 21) matter, the genes get different messages than they're supposed to get resulting in unpleasant or different from the norm outcomes. These outcomes include various facial features (including those associated with down syndrome), deafness, a form of leukemia, various breakdowns of amino acids, etc. This website explains it better than I ever could http://ghr.nlm.nih.gov/chromosome/21

With the help of various therapies and other interventions, a child with down syndrome has a better chance at reaching his or her full potential. Without the aid of therapies & other interventions a child with down syndrome would & will be like any other child who has a learning disability, physical incapability or other miscommunication in the genes.

So I suggest that before "you" start to discuss something with me about down syndrome, you had better have your facts straight because you bet your sweet bippy that I have done a ton of research on genetics, chromosomes, what each gene on chromosome 21 does and how a miscommunication in between of those genes can cause things to go wrong. I have also done a ton of research and have found that just because there can be a miscommunication between the genes, doesn't mean there has to be. It doesn't mean that simply because a mutation in gene amyloid beta (A4) precursor protein or APP can cause alzheimer's, that it will cause alzheimer's in my son. 

Today I got a phone call from our original service coordinator, Mrs. R. She called to inform me that the service coordinator, Ms. A, we wanted to transfer Sean's case to left the agency she was working with. I was so angry that Ms. A had left the agency and didn't bother to call us. I had spoken with her last week so it's not like she didn't know she was getting Sean's file. I feel it was completely unprofessional of her to accept our case and then leave. Mrs. R asked me today why we were switching coordinators. I didn't really want to have to deal with that. I was trying to make it as painless as possible. I finally just told Mrs. R that we were switching because I felt we'd benefit more from a coordinator who works with our service provider more often and has a good working relationship with our therapists. That isn't an untruth. It just wasn't the whole truth.

What I am finding is that by being an involved parent, I'm expected to do a lot of the leg work for Sean's case. Not that as his mother I shouldn't know things about his care or be able to speak to therapists, social workers, etc on their level. But when I ask a question, I expect to have a liaison that I can trust to point me in the right direction. I want a coordinator that instead of sending me a disc of clinical guidelines (you know because she knows "i'll find what I'm looking for"), that she'll just tell me to get a letter from the pediatrician & a justification from Sean's therapist.

So I called the service provider for Sean's therapies & the director, who has always been wonderful with us, helped us find a new service coordinator who had an open slot for us. In the end it's for the better. Everyday I learn something new about this early intervention maze.

Tonight was Sean's physical therapy evaluation. I knew & know that Sean is behind in his motor skills. I'm reminded of that fact every time we goto story time. Which, by the way, I think that until I can get over myself I have to stop going. I'm reminded that Sean is behind because there is a little girl who is 2 weeks older than Sean and she is spot on with her head control. She is where Sean should be. It leaves me feeling depressed every time I go. It also frustrates me that I can't just let it go. I work so hard with Sean and yet he just sits like a lump or gets pissed when I try to make him do some exercises. I have no clue what I'm doing with him or how I can make him happy.

Anyway, the evaluator came & she checked Sean out. She confirmed that Sean was in fact a little behind in his head control. She wouldn't say it was bad & she certainly couldn't say that it was good. And even though I was the one who initiated the evaluations because I know Sean is behind, it still saddened me to have someone agree with me. To Sean's credit though, he was quite angry & quite uncomfy. He needed to poop in the worst way & just wanted to eat. So he pretty much screamed the entire time and wouldn't cooperate. So it will work out for him in order to get the physical therapy, but it still stung quite a bit.

We'll find out in about a week what Sean's scores are for his physical therapy evaluation.