Saturday, August 28, 2010
I don't want to hear all of the "maybe you need to put her down earlier, she could be overtired", or "maybe she wants to drop that nap", trust me, TRUST me, when I say I have tried it all. We are going through a very rough stage here and her terrible napping is making everything worse. Her eating, her disposition, our overall quality of life. Last night she cried for an hour straight before bed which involved a huge projectile puke all over the carpet. Lovely. I knew it was because she was tired but why isn't there an "off" button on these things? I hate that I have no control over getting her to fall asleep.
So all of this rambling to say, I have let us regress in the napping arena. I now cave if she has been laying awake for an hour and is clearly tired and stick her in the swing which honestly works every time. I know it's not a good habit, trust me I have always been all about sleep training and getting your child to fall asleep in their crib and self soothe. But at this point, I'm doing whatever I can to survive. If The Chubs was a normal healthy baby, I would tackle this so much differently, but she's not, so we do what we have to do to get her sleep during the day so she will eat better, and her sensory issues will not suffer further.
I'm trying to not make this a habit, I really am. But check back with me in a month. We may run our swing into the ground.
Thursday, August 26, 2010
Well to make a long story short, I absolutely love her. She's wonderful and The Chubs loves her to death (she was smiling at her and showing off the entire time). She's great with kids and actually had a child with reflux so she gets it. From what she observed, The Chub Muffin has a lot of sensory issues, which is why she is hesitant to grab for things, touch things, and eat from a spoon. She also gets agitated by loud noises and often cries when she's moved from place to place or out of the bathtub. I was an idiot and didn't pick up on any of these cues until recently. I guess I figured it was "normal" behavior. I guess not.
Her thought is that she is not napping well due to these sensory issues and because of her short naps, it's compounding the problem. She wants to work on getting her nervous system regulated so we can get her to sleep better and not be as sensitive toward textures, various positions, noise and objects.
I also finally (with a lot of effort on my part) got her enrolled in the feeding therapy program at Children's. Nevermind that the head of the department STILL has not returned my calls regarding getting her placed. I had to dig up an old number we had from the NICU when The Chubs was seen by an OT for her lack of suck/swallow/breath coordination. If I hadn't had that number who knows how long this would've taken. I love this OT as well. She is wonderful and got my daughter to take several bites of food. Something we have not been able to replicate since, but at least I know it's possible. She also suspected sensory issues and sent me home with a questionnaire.
In other more interesting news, The Chubs has finally learned how to roll from back to tummy. She did this a few times during nap time and at night where she proceeded to sleep on her tummy for quite some time. I'm hoping this becomes a favorite sleeping position because it's supposed to be one of the best positions for reflux. It has to be all her idea though. And yes, she did technically roll from back to tummy around 6 months but it was an accident. One she was determined not to repeat for quite some time because she normally hates her belly.
Her second tooth is in now and all though they have not come all the way up, they are getting there everyday. She still seems to be in discomfort, however. I'm sure having heightened senses probably doesn't make it easy.
Finally, she is beginning to wave when I take her to look at herself in the mirror. It's kind of a shy wave at the moment, but she gets a kick out of seeing us together in the mirror. I also think she's beginning to sign "Mom". I've shown her this sign for several months now and every now and then she does it. The other day she did it while saying "mmma", so I think she knows what she's doing. It's anybody's guess!
Friday, August 20, 2010
A friend of mine shared this with me, and I thought I would post it. Although many may not consider The Chubs as having a disability, there are many similarities due to the extra care she requires. She is also 1/4 dutch so it's fairly fitting :)
WELCOME TO HOLLAND
by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
For us Holland may only turn out to be an extra side trip and we very well could still make it to Italy but I would never ever change going to Holland for anything in the world.
Thursday, August 19, 2010
Speaking of solids. I have a new approach that was recommended to me by several people and an OT:It's much more enjoyable for both of us. I put her purees all over her tray and she can play in them and then suck them off her hands. Because she hates the spoon, this is a good starting point. Right now, spoons are simply for playing with and chewing on.
She trusts her hands and sticks them in her mouth constantly so not only does this get her familiar with the taste of solids but she also has full reign and control so she isn't as resistant and doesn't build as many negative associations with them. This has been a painfully slow process but when you're dealing with a child with severe reflux, everything seems to move at a snails pace and I'm grateful for what progress we've made.
Tuesday, August 17, 2010
Yesterday was The Chubs' 9 month check up. I knew that due to the teething and poor eating as of late that she probably wouldn't have gained much or gained at all. I was not prepared, however for a loss. She weighed in 3.5 oz less than her last appointment. I was devastated. This loss was so hard to swallow. We have been feeding her round the clock (every 3 hours) all day and night for the past few weeks. There is nothing more we can really do at this point. If she continues to lose weight a feeding tube will be imminent. We have been lingering in the 12 lb. range since late May. We were so close to 13 lbs at her last check up but now we've slipped back to 12 1/2 lbs. once again. I'm tired, I'm overwhelmed, and I'm frustrated. There isn't much more to say about it. I would love to post a happy go-lucky 9 month post about all the fun and exciting things she's doing now but that will have to wait. I'm just not in the mood.
Thursday, August 12, 2010
Lately she's been doing this thing where she likes to shake her head "no" for everything. Not a good sign! Thank goodness she doesn't know how to say "no" yet. We've got a little miss "thang" on our hands.
Now for the good stuff. My sweet amazing Hubs is going to watch The Chubs all weekend long while my best friend is in town. We're going to the mountains and staying at a very nice hotel with a spa. We'll be getting spa treatments, sleeping in and lounging by the pool. I seriously cannot wait! This was all The Hubs' idea. Yes, he is amazing and no you cannot have him, he's taken. Step off...
Tuesday, August 10, 2010
Friday, August 6, 2010
I was happy to discover she had gained 1/2 oz a day since the last appointment and apparently has grown an entire inch since then as well (however the guy may have messed up because that seems a little extreme!). Feeling good about the progress we'd made (I say "we" because it takes an army to get this girl to eat and gain weight), we were placed in a room where we waited for the GI to come in and discuss our findings.
Last time we were at the GI, we were told by the nutritionist that her weight for height was actually fairly good and that she'd stayed on her own growth curve but was beginning to drop from her growth curve and that was why they were concerned. Today the chart showed she had caught up with her own curve, but this time it wasn't good enough for them. Now it is apparently very important that she does some major catch up growth and gets on the charts. MAKE UP YOUR MINDS! So what could've been a happy appointment turned into another "dire" situation where we apparently need to figure out how to get The Chubs onto the growth chart.
To say I'm frustrated is an understatement. They've scheduled a PH probe and an endoscope to see if she has esophagitis and to see how bad her reflux actually is and if it's being controlled by the medicine. I'm glad we'll get some results from that, but I'm getting so tired of her weight gain never being "enough" in the eyes of the doctors. She has always been 1st percentile, she has steadily maintained her growth curve. What if this is just who she is?
Thursday, August 5, 2010
- I receive a phone call from such and such department saying there is a referral for The Chubs and to call and set up an appointment. I make the call, give her name, date of birth, home address, etc, and they look her up. "What are we seeing her for?" Is always the question that follows. YOU TELL ME! You called me and said you received a referral! I dig through paperwork I've received to figure out why the heck she IS being seen because I can't keep them all straight! I finally find it and tell them and then I hear "Hmmm, it doesn't mention that here." This is where I go crazy. Seriously?!?!
- The previous annoyance almost rivals my frustrations with an office that makes you fill out 15 pages of lengthy information regarding why you are seeing the doctor, all to have the doctor walk in to the appointment without even GLANCING at the paper and asking you all over to repeat in verbal form everything you just spent 20 minutes trying to write out on their in-depth questionnaire.
- My daughter is almost 9 months old. We scheduled a GI appointment for her back when she was 5 1/2 months and have only been able to get in to see the GI ONCE. This means we have spent almost half of her life waiting on care that she really needs. I understand that Children's Hospital is busy, but when a child is not eating well and is already off the charts small, it seems like it should maybe be a little more urgent.
- Conflicting opinions drive me nuts. We have seen so many doctors and they all have a different idea of how to handle things.
- Drastic measures seem to be common at Children's Hospital. This was our experience in the NICU. There was no possible way my daughter just had something "simple" like reflux. She either had a stroke in the womb, meningitis, encephalitis, and was most definitely having seizures. WRONG! It was "just" reflux, so forgive me if when I have big scary procedures and diagnoses thrown at me left and right, I tune you out. I'm tired of the scare tactics. Let's have a little hope for a change.
Monday, August 2, 2010
They say this tends to happen when babies are about to drop a nap. It is nap time purgatory until she transitions to 2 naps on her own. This morning, she did not sleep AT ALL. I was tired of hearing her thump on the ceiling so I just got her up. When she's up she's cranky, when she's down she doesn't sleep. Rinse, lather and repeat.
What do I do with this child? The Hub's business trip to Germany in a few weeks is looming in the back of my head. How will I survive the week he's gone? At least right now when she's driving me crazy I can pass her off to him and usually he can get her to eat, or calm her down when she's fussing because she's tired, and then fussing because she doesn't want to sleep, then fussing because she doesn't want to eat.
It's a good thing she's so darn cute.