I just received a call informing me that Brooklyn has been denied for her Synagis shots for RSV this year.
Apparently, our insurance changed its' criteria this summer and decided that babies with "congenital anomalies" would only be approved for Synagis during their first 12 months of life, regardless of how long those congenital anomalies continue to cause them problems.
I am so upset that I can't quit crying. I am ready to rip my hair out from the frustration. I have been jumping through hoops trying to get my HIGH-RISK daughter an H1N1 vaccination for a month now, with absolutely no success. No one has them. Not here, not Dallas. My only offer has been to give her one with thimerosol (mercury) in it. I think not. We've already had our autism scare and are dealing with delays as it is. I thought for sure when I took Brooklyn to see one of her specialists at Children's Medical that they would have the vaccinations. Nope.
I am absolutely terrified. Every day brings more news stories about the virus, more children dying. Every time a local child has died, the media has made a big deal out of stressing that the child "had a compromised respiratory system." I know why they do it. It's supposed to comfort parents of healthy children, and that's all well and good, but what about us parents of babies and children who do have those "compromised respiratory systems." Thanks for adding to the panic and anxiety and fear we already had.
I'm becoming more and more of a hermit with Brooklyn with each passing week. We don't go to anyone else's house. Birthday parties? I think not. Anything indoors with multiple people, I don't want her there. Stores, malls, restuarants, I am freaked out. I don't want to take her anywhere anymore. I'm just too scared. My anxiety level is ridiculous. Outdoor things seem less threatening to me. We took her to the pumpkin patch two weeks ago, but I didn't want her to touch anything. We went to the zoo on Halloween, and I was alright most of the time, but when we went in the penguin house, where it was warm and humid and crowded and seemed like a germ breeding ground, I wanted Brooklyn out of there as quickly as possible. I make up excuses why I can't go places with my friends. We are quickly becoming prisoners in our own home.
Can someone please give my little girl a break? I just want her protected from all of these horrible things going around.This doesn't seem like too much to ask.
The Synagis coordinator said that she is going to try to get Brooklyn's pulmonologist to appeal the ruling. So all we can do at this point is hope and pray for a positive outcome.
Friday, November 6, 2009
Monday, November 2, 2009
These moments
I like
the weekend mornings
when it is just she and I.
I wake up to get her from her from her crib and she smiles at me,
offers me her bink and says in her high-pitched little singsongy voice,
"hap-py, hap-py, hap-py, hap-py!"
She stands up, reaches out for me, and I pick her up.
"Good morning, Baby Bear!," I say, "Did you sleep good?"
She answers by giving me sweet baby hugs and kisses.
There could not be a better start to a day.
I cradle her warm, soft body in my arms.
Then, all too soon,
the weekend mornings
when it is just she and I.
I wake up to get her from her from her crib and she smiles at me,
offers me her bink and says in her high-pitched little singsongy voice,
"hap-py, hap-py, hap-py, hap-py!"
She stands up, reaches out for me, and I pick her up.
"Good morning, Baby Bear!," I say, "Did you sleep good?"
She answers by giving me sweet baby hugs and kisses.
There could not be a better start to a day.
We head to the kitchen, where I make her a morning bottle.
The two of us go to the couch so that she can have her breakfast.
She still lets me hold her like a newborn baby when she takes her bottle.
We snuggle,
just she and I,
in our pajamas.
She lays her head against my chest,
I rest my cheek on her head,
and we curl up under a blanket together.
I notice that she drinks her bottle slower than she does at other times.
If I move my head the slightest bit,
she snuggles her body closer against mine,
she snuggles her body closer against mine,
pushing her head underneath the curve of my neck.
She is showing me that she wants to be close to me, too.
She likes our morning cuddle times as much as I do.
I am glad, because these moments seem so few and far between these days.
My baby girl is growing so quickly,
she is so busy,
she has so much to learn,
so much to explore.
She rarely has time to let her mommy hold her close,
no matter how much I crave it.
I cradle her warm, soft body in my arms.
We gaze into each other's eyes.
I stroke her silky soft hair,
I kiss her smooth forehead
and her plush, chubby cheek.
A dozen times,
a hundred times.
I tell her how much I love her
a thousand ways,
a million ways.
That she is my everything,
as if that could describe it fully.
The truth is, I can never find the perfect words
to tell her just how much of a miracle she is.
Then, all too soon,
breakfast is done,
and she reaches up to give me a kiss
before she toddles away
to find her next adventure.
Tuesday, October 27, 2009
I ♥ Faces: Week 42 - Halloween Dress Up Photo Challenge
Here is my little ladybug all ready for Halloween! This was one of the few shots I managed to capture in between the 10,000 times Brooklyn threw her antennae on the ground. LOL. Oh well.
I may be biased, but I think she's the cutest ladybug ever with or without them. :)
Please visit I ♥ Faces to see lots of other little Halloween cuties!
Wednesday, October 21, 2009
Doing it on my own: EPIC FAIL.
I have been an extremely bad blogger and reader lately. But I've been bad at a lot of things in my life, and I'm finally going to attempt to explain.
About four months ago, I finished breastfeeding Brooklyn and was able to switch antidepressants. I wanted to get off Lexapro because my doctor had told me that after a year, it caused weight gain. I had suspected that it was already responsible for the weight that had been creeping on and would not go away, no matter what I did. So my doctor had said to call when Brooklyn was weaned, and they would switch me to Wellbutrin, which is better for the weight issue. But when I called, they said I couldn't just switch, I had to wean myself off the Lexapro slowly. I had been taking 20 mg a day. I had to drop back to 10 mg a day for a 2 weeks, then one every other day for 2 weeks, then one every third day for a week. I was supposed to call them for the Wellbutrin prescription when I got down to every third day.
But by the time I got down to that one pill every third day, I decided that I was doing all right. And here's the thing: I was prescribed that medicine for post-partum depression. Can you really say you have post-partum depression anymore when you have a toddler? Hardly. I was a bit more emotional, I cried at more things, both happy and sad. I figured it was just the fact that I didn't have the pills acting as a numbing barrier between me and my life anymore. I decided that I was ready to feel everything again. I stopped taking the Lexapro, and I did not call for the Wellbutrin. I was done.
Unfortunately, it didn't take long for feeling like I was all right to turn into feeling miserable. I was sad and unhappy and overly sensitive and angry at everything, I didn't want to go anywhere, I wanted to sleep all of the time, I fought with my husband about ridiculous things that normally wouldn't upset me. I cried countless times every day, again, often about things that weren't even that big of a deal.
Dave didn't get the carseat out of my car before I went to work, so he couldn't go get Brooklyn's prescription like I had asked him to. She was going to miss a dose. It was his off day. Why did he have to be so damn lazy? I was so, so angry. Why should she have to suffer because he doesn't listen to me? Meltdown.
Brooklyn had diarrhea on her Tucker sling an hour before bedtime. I didn't know how I was going to get it clean before she had to go to sleep. Dave was leaving for work. Brooklyn was pulling on my leg screaming and fussing. I stood there bawling.
I don't know. There are probably dozens of these scenarios I'd rather not think about because they just aren't me. Normally. But I let it go on for months. Stubbornness.
I sat at my friend's house and cried and told her about what was going on. "You know what you have to do," she said. "You already told me you're not okay. That's what these medicines are for. You told me that before."
"But how are you ever supposed to know when you can stop? Am I just supposed to be on these pills forever or something? I don't want that. That's ridiculous."
"You tried it without them, it didn't work. You're not ready. You have a lot of stress. You have too much going on. Maybe you can try again in a year or something."
I still did nothing.
On a day when I was at work and had treated my husband particularly badly, I had been ignoring his calls for some time. I finally picked up the phone to talk to him. He told me how frustrated he was with me, but that he knew how bad I had been feeling. "I really think you weren't ready to stop taking your medicine," he said. "You need to call your doctor."
"I'm not same damn psych patient that needs to be monitored on their meds," I snapped back.
"I'm not saying that! You're the only person who thinks that! You're so hypocritical! You work in this job where you tell people they need to get help, where you tell people it's okay to be on these medicines, that they help them, and then you think you're the only person who's above taking them. You won't even tell your own mom about it because you're so damn ashamed of it! I don't get you!"
Here come the tears. "That's easy for you to say. You don't have to take them."
"But I would. If something happened at work or something, and it affected the way things were at home between me and you and Brooklyn, I would do it, and I know you wouldn't judge me for it, right?"
"Hold on." I had to get up and close my office door before the serious waterworks started.
"Okay," I said, "I just don't get it. How can Brooklyn be 18 months old and I still have post-partum depression?"
"Baby. You don't. You just have depression now."
Now I was bawling like a baby. "W-w-w-whyyyyyyy???"
"I don't know why, baby. We just have to deal with it."
"That's not fair. I wasn't like this before."
"I know."
"I hate me. I hate this."
"I know. But Brooklyn loves you, and I love you. And we need you to be happy."
It still took me two weeks to make myself go to the doctor. I did it though. I'm taking Cymbalta now. It's been three weeks, and I'm having a hard time on it. I am starting to feel less depressed, but I'm very, very sick to my stomach and exhausted all of the time. I'm also taking a new medication for my migraines along with it, so I'm not sure if they're working together to make me feel awful. The 14 pounds I've lost is not too shabby though. I'm working through it. This too shall pass, right? Just bear with me, bloggy friends.
So much for doing it all by myself.
About four months ago, I finished breastfeeding Brooklyn and was able to switch antidepressants. I wanted to get off Lexapro because my doctor had told me that after a year, it caused weight gain. I had suspected that it was already responsible for the weight that had been creeping on and would not go away, no matter what I did. So my doctor had said to call when Brooklyn was weaned, and they would switch me to Wellbutrin, which is better for the weight issue. But when I called, they said I couldn't just switch, I had to wean myself off the Lexapro slowly. I had been taking 20 mg a day. I had to drop back to 10 mg a day for a 2 weeks, then one every other day for 2 weeks, then one every third day for a week. I was supposed to call them for the Wellbutrin prescription when I got down to every third day.
But by the time I got down to that one pill every third day, I decided that I was doing all right. And here's the thing: I was prescribed that medicine for post-partum depression. Can you really say you have post-partum depression anymore when you have a toddler? Hardly. I was a bit more emotional, I cried at more things, both happy and sad. I figured it was just the fact that I didn't have the pills acting as a numbing barrier between me and my life anymore. I decided that I was ready to feel everything again. I stopped taking the Lexapro, and I did not call for the Wellbutrin. I was done.
Unfortunately, it didn't take long for feeling like I was all right to turn into feeling miserable. I was sad and unhappy and overly sensitive and angry at everything, I didn't want to go anywhere, I wanted to sleep all of the time, I fought with my husband about ridiculous things that normally wouldn't upset me. I cried countless times every day, again, often about things that weren't even that big of a deal.
Dave didn't get the carseat out of my car before I went to work, so he couldn't go get Brooklyn's prescription like I had asked him to. She was going to miss a dose. It was his off day. Why did he have to be so damn lazy? I was so, so angry. Why should she have to suffer because he doesn't listen to me? Meltdown.
Brooklyn had diarrhea on her Tucker sling an hour before bedtime. I didn't know how I was going to get it clean before she had to go to sleep. Dave was leaving for work. Brooklyn was pulling on my leg screaming and fussing. I stood there bawling.
I don't know. There are probably dozens of these scenarios I'd rather not think about because they just aren't me. Normally. But I let it go on for months. Stubbornness.
I sat at my friend's house and cried and told her about what was going on. "You know what you have to do," she said. "You already told me you're not okay. That's what these medicines are for. You told me that before."
"But how are you ever supposed to know when you can stop? Am I just supposed to be on these pills forever or something? I don't want that. That's ridiculous."
"You tried it without them, it didn't work. You're not ready. You have a lot of stress. You have too much going on. Maybe you can try again in a year or something."
I still did nothing.
On a day when I was at work and had treated my husband particularly badly, I had been ignoring his calls for some time. I finally picked up the phone to talk to him. He told me how frustrated he was with me, but that he knew how bad I had been feeling. "I really think you weren't ready to stop taking your medicine," he said. "You need to call your doctor."
"I'm not same damn psych patient that needs to be monitored on their meds," I snapped back.
"I'm not saying that! You're the only person who thinks that! You're so hypocritical! You work in this job where you tell people they need to get help, where you tell people it's okay to be on these medicines, that they help them, and then you think you're the only person who's above taking them. You won't even tell your own mom about it because you're so damn ashamed of it! I don't get you!"
Here come the tears. "That's easy for you to say. You don't have to take them."
"But I would. If something happened at work or something, and it affected the way things were at home between me and you and Brooklyn, I would do it, and I know you wouldn't judge me for it, right?"
"Hold on." I had to get up and close my office door before the serious waterworks started.
"Okay," I said, "I just don't get it. How can Brooklyn be 18 months old and I still have post-partum depression?"
"Baby. You don't. You just have depression now."
Now I was bawling like a baby. "W-w-w-whyyyyyyy???"
"I don't know why, baby. We just have to deal with it."
"That's not fair. I wasn't like this before."
"I know."
"I hate me. I hate this."
"I know. But Brooklyn loves you, and I love you. And we need you to be happy."
It still took me two weeks to make myself go to the doctor. I did it though. I'm taking Cymbalta now. It's been three weeks, and I'm having a hard time on it. I am starting to feel less depressed, but I'm very, very sick to my stomach and exhausted all of the time. I'm also taking a new medication for my migraines along with it, so I'm not sure if they're working together to make me feel awful. The 14 pounds I've lost is not too shabby though. I'm working through it. This too shall pass, right? Just bear with me, bloggy friends.
So much for doing it all by myself.
Tuesday, September 29, 2009
September pulmonologist appointment
It has been nearly 2 weeks since Brooklyn had her appointment with Dr. G2, her pulmonologist, so I am way overdue in writing this post.
Okay. Brooklyn weighed just over 21 pounds and they said she was 30 inches long (but I don't think she shrunk an inch since she saw Dr. A a few days prior!) Her oxygenation was 99%, and the nurse didn't tell me what her respirations were :(.
Dr. G2 was happy that increasing Brooklyn's dosage of Bethanechol has helped her stridor so much. It was literally two and a half to three weeks after our last appointment with him in June, when he increased her dose 0.3 ml, that her stridor pretty much disappeared at night. It was pretty incredible. It caused a lot of anxiety for us at first, because hearing every noisy breath she took at night was our "normal," but we have adjusted and can sleep without hearing it now.
Brooklyn has had a runny nose for about a month now, and Dr. G2 thinks the postnasal drip may be cauing her to cough more thn she used to. So now we have to give her a nasal spray once per day. She hated it at first, and I wasn't surprised. I mean, the girl can't stand when I try to wipe her runny nose. But now she doesn't mind it and even thinks it's funny to sniff really loud a bunch of times after we put the spray in her nose.
Dr. G2's main concern was that Brooklyn's stridor still gets pretty loud with activity. She gets noisy when she is running around and playing and even when she is doing things that aren't particularly exerting or strenuous, like picking up toys or getting her books out of her basket. Her respirations get a lot higher and she gets much noisier any time she is being active. I don't think that her stridor is as loud as it used to be, but it's still there, and she's still obviously struggling.
Brooklyn also coughs and starts choking out of nowhere, even if she hasn't been eating or drinking for a long time. Sometimes we are just riding in the car and she will just start choking, and I have no idea why this is going on, if it is the reflux or if it is something else. She hadn't actually been "spitting up" with the reflux for a while, she had been refluxing and swallowing everything back down. Over the past week, she has started spitting up again. The reason why I explain this in conjunction with her pulmonologist's visit is that all of her doctors have pointed out that everything inside of her throat/airway area is just weak...it's all connected...and there doesn't seem to be a great deal of improvement.
Dr. G2 said that he is concerned that she may be exhibiting some signs of "airway reactivity." I didn't understand what this meant, and all of my Googling didn't really help me either. A nurse friend of mine said that her son has it, and it means that he has asthma-like symptoms and has to have nebulizer treatments and such any time that he has a cold or is sick. So is it basically a chronic respiratory condition? Forever? That's really discouraging to me...I had hoped that once Brooklyn outgrew her laryngomalacia, we would be done with all of this for good. Does anyone know anything about airway reactivity or reactive airway disease? Can y'all help me understand what this is? I know I have a few nurse bloggy friends out there ;).
Anyway, Dr. G2 started Brooklyn on steroid inhaler, Flovent. It says on her report that it will "provide anti-inflammatory control" and "hopefully decrease the noise and work of breathing that she has when she exercises." She has to take two puffs twice per day using this lovely little contraption called the Aerochamber. It's like a tube with an oxygen mask and a one-way valve on one side and a hole for the inhaler to fit in on the other side. They gave Dave and I a "training session" at the doctor's office, and oh my, does Brooklyn ever despise that thing. The training session consisted of me holding Brooklyn's body and head still, Dave holding her arms down, and the nurse holding the Aerochamber on her face while Brooklyn screamed and did her best to flail and twist away from the Evil Torture Device. We had to watch for the valve to go in and out six times. Once it finally did, the nurse removed the mask from Brooklyn's face. I leaned back in the chair and cheered for Brooklyn. "Okay," said the nurse. "Let's do the second puff." Oh, crap. And then there was round two of the battle royale.
The inhaler has been terrible for us. It was a horrible battle for several days, then seemed to improve for a few days. We even had two or three days with no tears at all!!! But...now she is back to kicking, fighting, trying to pull the inhaler out of the Aerochamber, trying to stick her fingers in the valve, trying to run away, twisting away from me, shaking her head back and forth, trying to puff the inhaler extra times....it is no fun at all for anyone involved. We have tried to make it as "fun" as we can...we put it on our faces, we let her put the Aerochamber on her dolls and bears, we breathe loudly along with her...I don't know. It sucks. It's like the return of the evil nebulizer. She never did get used to that thing, it always scared her. I was so happy when we were able to return it to the home health agency!!
So that was our visit with Dr. G2. He said that he was pleased with Brooklyn's progress, but....you know. Why can't we be done with this? It seems like with every appointment, we are adding and increasing medications, when we were told so long ago that Brooklyn would be so far beyond all of this by now. We go back in 3 months.
Okay. Brooklyn weighed just over 21 pounds and they said she was 30 inches long (but I don't think she shrunk an inch since she saw Dr. A a few days prior!) Her oxygenation was 99%, and the nurse didn't tell me what her respirations were :(.
Dr. G2 was happy that increasing Brooklyn's dosage of Bethanechol has helped her stridor so much. It was literally two and a half to three weeks after our last appointment with him in June, when he increased her dose 0.3 ml, that her stridor pretty much disappeared at night. It was pretty incredible. It caused a lot of anxiety for us at first, because hearing every noisy breath she took at night was our "normal," but we have adjusted and can sleep without hearing it now.
Brooklyn has had a runny nose for about a month now, and Dr. G2 thinks the postnasal drip may be cauing her to cough more thn she used to. So now we have to give her a nasal spray once per day. She hated it at first, and I wasn't surprised. I mean, the girl can't stand when I try to wipe her runny nose. But now she doesn't mind it and even thinks it's funny to sniff really loud a bunch of times after we put the spray in her nose.
Dr. G2's main concern was that Brooklyn's stridor still gets pretty loud with activity. She gets noisy when she is running around and playing and even when she is doing things that aren't particularly exerting or strenuous, like picking up toys or getting her books out of her basket. Her respirations get a lot higher and she gets much noisier any time she is being active. I don't think that her stridor is as loud as it used to be, but it's still there, and she's still obviously struggling.
Brooklyn also coughs and starts choking out of nowhere, even if she hasn't been eating or drinking for a long time. Sometimes we are just riding in the car and she will just start choking, and I have no idea why this is going on, if it is the reflux or if it is something else. She hadn't actually been "spitting up" with the reflux for a while, she had been refluxing and swallowing everything back down. Over the past week, she has started spitting up again. The reason why I explain this in conjunction with her pulmonologist's visit is that all of her doctors have pointed out that everything inside of her throat/airway area is just weak...it's all connected...and there doesn't seem to be a great deal of improvement.
Dr. G2 said that he is concerned that she may be exhibiting some signs of "airway reactivity." I didn't understand what this meant, and all of my Googling didn't really help me either. A nurse friend of mine said that her son has it, and it means that he has asthma-like symptoms and has to have nebulizer treatments and such any time that he has a cold or is sick. So is it basically a chronic respiratory condition? Forever? That's really discouraging to me...I had hoped that once Brooklyn outgrew her laryngomalacia, we would be done with all of this for good. Does anyone know anything about airway reactivity or reactive airway disease? Can y'all help me understand what this is? I know I have a few nurse bloggy friends out there ;).
Anyway, Dr. G2 started Brooklyn on steroid inhaler, Flovent. It says on her report that it will "provide anti-inflammatory control" and "hopefully decrease the noise and work of breathing that she has when she exercises." She has to take two puffs twice per day using this lovely little contraption called the Aerochamber. It's like a tube with an oxygen mask and a one-way valve on one side and a hole for the inhaler to fit in on the other side. They gave Dave and I a "training session" at the doctor's office, and oh my, does Brooklyn ever despise that thing. The training session consisted of me holding Brooklyn's body and head still, Dave holding her arms down, and the nurse holding the Aerochamber on her face while Brooklyn screamed and did her best to flail and twist away from the Evil Torture Device. We had to watch for the valve to go in and out six times. Once it finally did, the nurse removed the mask from Brooklyn's face. I leaned back in the chair and cheered for Brooklyn. "Okay," said the nurse. "Let's do the second puff." Oh, crap. And then there was round two of the battle royale.
The inhaler has been terrible for us. It was a horrible battle for several days, then seemed to improve for a few days. We even had two or three days with no tears at all!!! But...now she is back to kicking, fighting, trying to pull the inhaler out of the Aerochamber, trying to stick her fingers in the valve, trying to run away, twisting away from me, shaking her head back and forth, trying to puff the inhaler extra times....it is no fun at all for anyone involved. We have tried to make it as "fun" as we can...we put it on our faces, we let her put the Aerochamber on her dolls and bears, we breathe loudly along with her...I don't know. It sucks. It's like the return of the evil nebulizer. She never did get used to that thing, it always scared her. I was so happy when we were able to return it to the home health agency!!
So that was our visit with Dr. G2. He said that he was pleased with Brooklyn's progress, but....you know. Why can't we be done with this? It seems like with every appointment, we are adding and increasing medications, when we were told so long ago that Brooklyn would be so far beyond all of this by now. We go back in 3 months.
Tuesday, September 15, 2009
Early Childhood Intervention evaluation
The ECI evaluation is a state form called Developmental Assessment of Young Children (DAYC), and it covers five areas of development. Brooklyn had her evalutation yesterday, and it took about two hours. In order to qualify for services with ECI, Brooklyn would have to show a "significant delay" of at least three to four months in at least one of the five areas. She is 18 months old, and in an ideal world, she would score as an 18 month old on everything. But it's not, and here is how she scored out:
1. Cognitive - 21 months
2. Communication - 13 months
3. Social-Emotional - 11 months
4. Physical Development - 12 months
5. Adaptive Behavior - 12 months
So. "Significant delays" in four out of five areas. I really, really did not expect that, and it was like a punch in the stomach. Delays in one or two areas that overlap, yeah, okay, I understand that. But four???
The way that they explained it to me is that most of the problems go back to speech - that Brooklyn doesn't have a word for anything that she wants, that she doesn't initiate using words, that she doesn't show us what she wants or needs with speech or gestures. When she wants something, she gets very upset and just cries and screams, and we are just left to try to play the guessing game about what has her so upset. A major goal is going to be to teach her words and signs to show us what she wants to reduce her frustration and make things happier for everyone.
I know that my baby understands a whole lot of what we say but just can't say it herself, but yet the low "adaptive" score comes from her not understanding what things like "put the block ON the table" or "put the cup IN the bowl" mean. Also, that she doesn't play in "repeated sequences," such as rock the baby, feed the baby, burp the baby....three or four repeated things in a row. I think she seems awfully young to be doing things like that, but what do I know. I cried when she explained this part to me, because it makes me feel like I haven't been doing enough to teach Brooklyn things she should know at her age. The guilt I feel over this is ridiculous. I feel like I have failed my daughter, like a lazy, sorry-ass, unworthy mother.
There were a few things that made her score low that I honestly didn't agree with...like on the Social-Emotional section, at her age, they wanted her to prefer one parent over the other for things like feeding her, changing her, etc. She doesn't. The only thing is that she only wants me to read to her. They considered it a negative that she didnt have a favorite parent for these everyday tasks. That seems strange to me.
The good news from yesterday was that the speech therapist said that she saw NO signs of autistic behavior whatsoever. Thank you, God!!!!
For now, we will have a visit from the speech therapist once per month, the developmental coordinator once or twice per month, and the physical therapist has not contacted us to schedule anything yet. Every six months they will re-evaluate and see whether she is making progress.
The speech therapist said that this differs from a lot of programs where parents take their children to therapy twice per week or something like that. They visit less often and focus more time on teaching the parents strategies to use at home with the children so that the children can be benefiting from the therapy constantly, not just a couple of hours per week. I like that idea. I wonder if the physical therapy is going to be the same way. I honestly worry about that, because when I was supposed to do physical therapy stretches on Brooklyn's neck when she was an infant, it seemed to cause her so much pain that I could not do it. I cried more than she did.
Anyway, we did some initial goal-setting, and the speech therapist gave us just a couple of strategies to start using with Brooklyn at home (giving her simple choices, naming everything).
And that's where we are at right now.
1. Cognitive - 21 months
2. Communication - 13 months
3. Social-Emotional - 11 months
4. Physical Development - 12 months
5. Adaptive Behavior - 12 months
So. "Significant delays" in four out of five areas. I really, really did not expect that, and it was like a punch in the stomach. Delays in one or two areas that overlap, yeah, okay, I understand that. But four???
The way that they explained it to me is that most of the problems go back to speech - that Brooklyn doesn't have a word for anything that she wants, that she doesn't initiate using words, that she doesn't show us what she wants or needs with speech or gestures. When she wants something, she gets very upset and just cries and screams, and we are just left to try to play the guessing game about what has her so upset. A major goal is going to be to teach her words and signs to show us what she wants to reduce her frustration and make things happier for everyone.
I know that my baby understands a whole lot of what we say but just can't say it herself, but yet the low "adaptive" score comes from her not understanding what things like "put the block ON the table" or "put the cup IN the bowl" mean. Also, that she doesn't play in "repeated sequences," such as rock the baby, feed the baby, burp the baby....three or four repeated things in a row. I think she seems awfully young to be doing things like that, but what do I know. I cried when she explained this part to me, because it makes me feel like I haven't been doing enough to teach Brooklyn things she should know at her age. The guilt I feel over this is ridiculous. I feel like I have failed my daughter, like a lazy, sorry-ass, unworthy mother.
There were a few things that made her score low that I honestly didn't agree with...like on the Social-Emotional section, at her age, they wanted her to prefer one parent over the other for things like feeding her, changing her, etc. She doesn't. The only thing is that she only wants me to read to her. They considered it a negative that she didnt have a favorite parent for these everyday tasks. That seems strange to me.
The good news from yesterday was that the speech therapist said that she saw NO signs of autistic behavior whatsoever. Thank you, God!!!!
For now, we will have a visit from the speech therapist once per month, the developmental coordinator once or twice per month, and the physical therapist has not contacted us to schedule anything yet. Every six months they will re-evaluate and see whether she is making progress.
The speech therapist said that this differs from a lot of programs where parents take their children to therapy twice per week or something like that. They visit less often and focus more time on teaching the parents strategies to use at home with the children so that the children can be benefiting from the therapy constantly, not just a couple of hours per week. I like that idea. I wonder if the physical therapy is going to be the same way. I honestly worry about that, because when I was supposed to do physical therapy stretches on Brooklyn's neck when she was an infant, it seemed to cause her so much pain that I could not do it. I cried more than she did.
Anyway, we did some initial goal-setting, and the speech therapist gave us just a couple of strategies to start using with Brooklyn at home (giving her simple choices, naming everything).
And that's where we are at right now.
ECI intake and Pedi visit
This time last year, it was pretty normal for Brooklyn to have tons of appointments, but our calendar doesn't usually look like this anymore! Anyway, I have a lot to catch y'all up on. This past week, Brooklyn had her Early Childhood Intervention (ECI) intake appointment, an appointment with Dr. A, and her evaluation with the developmental specialist and speech therapist from ECI (I'm going to do a separate post on the ECI evaluation.) And tomorrow she sees her pulmonologist, Dr. G2.
Wednesday, 9/9 - ECI intake.
It took about six weeks to get this appointment for Brooklyn. I did a self-referral on the advice of a friend who is a nurse back when Brooklyn was not speaking at all.
The developmental coordinator came to our house Wednesday. She had told me over the phone that the intake would take about 20 minutes and that we were going to go over my pregnancy, Brooklyn's birth, her medical history, and her development. I thought it was really funny that the lady thought it would only take 20 minutes to go over all of Brooklyn's medical history...and I was right, she was there for over an hour.
Brooklyn warmed up to her immediately and really seemed to like her. She didn't determine Brooklyn's eligibility for services or anything at that point, it was strictly an information-gathering type of appointment. She told us she would return with the speech therapist to evaluate Brooklyn the following Monday. She also took note of Brooklyn's head tilt and said that she would talk to their physical therapist about the possiblity of coming to evaluate Brooklyn at the same time as well.
One thing that I think is really great about ECI is that they are going to come to our house for everything...so, no other kids, no waiting rooms, no germs, no sickies!!!
Friday, 9/11 - 18 month appointment with Dr. A, Brooklyn's pediatrician.
Brooklyn weighed 20 pounds, 10 ounces (5th percentile) and was 31 inches tall (almost 25th percentile). This showed up as a weight loss of almost a pound since last month. But I told Dr. A that there had been a different nurse there at our last appointment, and she had Brooklyn stand on the older kids' scale fully clothed, instead of laying her on the baby scale in her diaper like they normally do. Dr. A said that the substitute nurse should have listened to me when I tried to tell her about how they normally weigh Brooklyn, so he marked last month's weight as "falsely elevated."
Dr. A said that Brooklyn's weight gain is not great, as usual, but it is "adequate." We will keep her on 2 bottles of increased calorie formula per day for now to help her gain weight.
He was very happy, as of course we are, that Brooklyn is starting to say some words again. She has about eight words she says now (baby, bear, bink, bib, ball, yeah, this, eye, dada...oh, UPDATE...this weekend marked the return of MAMA!!!!) He was very encouraged that she is making progress again, and said, "I don't know what happened to make her regress like that. To be honest, we'll probably never know what happened." According to his standards, Brooklyn is almost back in the range of normal speech for her age.
We told Dr. A about the ECI evaluation that we had scheduled. He really doesn't think that speech therapy is all that helpful in children younger than two, but definitely doesn't feel like it hurts. He thinks that ECI will be able to help Brooklyn more with her head tilt than with anything else. He does think she needs some physical therapy for it at this point. He said that she can correct it for short periods of time, she just usually doesn't. Another thing that he said we will have to keep an eye on is that babies with head tilts can have vision problems - sometimes one of their eyes will not focus as well as the other eye because they don't look at things straight on. He said that around her second birthday, he will refer her to a pediatric optometrist to make sure everything is okay with her eyes, but right now, he doesn't see any signs of problems there.
Brooklyn had to get her Hib vaccine and her flu shot. I asked whether she would be getting Synagis shots again this fall and Dr. A said that he would call Dr. G2 to discuss it with him. He doesn't feel like RSV would be as detrimental to Brooklyn's health this season as it would have been last year, even though she has not outgrown her laryngomalacia. He is not sure how much our insurance would fight us over it either.
I guess we will find out more at Brooklyn's appointment with Dr. G2 tomorrow.
Wednesday, 9/9 - ECI intake.
It took about six weeks to get this appointment for Brooklyn. I did a self-referral on the advice of a friend who is a nurse back when Brooklyn was not speaking at all.
The developmental coordinator came to our house Wednesday. She had told me over the phone that the intake would take about 20 minutes and that we were going to go over my pregnancy, Brooklyn's birth, her medical history, and her development. I thought it was really funny that the lady thought it would only take 20 minutes to go over all of Brooklyn's medical history...and I was right, she was there for over an hour.
Brooklyn warmed up to her immediately and really seemed to like her. She didn't determine Brooklyn's eligibility for services or anything at that point, it was strictly an information-gathering type of appointment. She told us she would return with the speech therapist to evaluate Brooklyn the following Monday. She also took note of Brooklyn's head tilt and said that she would talk to their physical therapist about the possiblity of coming to evaluate Brooklyn at the same time as well.
One thing that I think is really great about ECI is that they are going to come to our house for everything...so, no other kids, no waiting rooms, no germs, no sickies!!!
Friday, 9/11 - 18 month appointment with Dr. A, Brooklyn's pediatrician.
Brooklyn weighed 20 pounds, 10 ounces (5th percentile) and was 31 inches tall (almost 25th percentile). This showed up as a weight loss of almost a pound since last month. But I told Dr. A that there had been a different nurse there at our last appointment, and she had Brooklyn stand on the older kids' scale fully clothed, instead of laying her on the baby scale in her diaper like they normally do. Dr. A said that the substitute nurse should have listened to me when I tried to tell her about how they normally weigh Brooklyn, so he marked last month's weight as "falsely elevated."
Dr. A said that Brooklyn's weight gain is not great, as usual, but it is "adequate." We will keep her on 2 bottles of increased calorie formula per day for now to help her gain weight.
He was very happy, as of course we are, that Brooklyn is starting to say some words again. She has about eight words she says now (baby, bear, bink, bib, ball, yeah, this, eye, dada...oh, UPDATE...this weekend marked the return of MAMA!!!!) He was very encouraged that she is making progress again, and said, "I don't know what happened to make her regress like that. To be honest, we'll probably never know what happened." According to his standards, Brooklyn is almost back in the range of normal speech for her age.
We told Dr. A about the ECI evaluation that we had scheduled. He really doesn't think that speech therapy is all that helpful in children younger than two, but definitely doesn't feel like it hurts. He thinks that ECI will be able to help Brooklyn more with her head tilt than with anything else. He does think she needs some physical therapy for it at this point. He said that she can correct it for short periods of time, she just usually doesn't. Another thing that he said we will have to keep an eye on is that babies with head tilts can have vision problems - sometimes one of their eyes will not focus as well as the other eye because they don't look at things straight on. He said that around her second birthday, he will refer her to a pediatric optometrist to make sure everything is okay with her eyes, but right now, he doesn't see any signs of problems there.
Brooklyn had to get her Hib vaccine and her flu shot. I asked whether she would be getting Synagis shots again this fall and Dr. A said that he would call Dr. G2 to discuss it with him. He doesn't feel like RSV would be as detrimental to Brooklyn's health this season as it would have been last year, even though she has not outgrown her laryngomalacia. He is not sure how much our insurance would fight us over it either.
I guess we will find out more at Brooklyn's appointment with Dr. G2 tomorrow.
Subscribe to:
Posts (Atom)
